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What health reform means for the people of Illinois

A blog by IllinoisHealthMatters.org

Wednesday, September 28, 2016

Our Section 1115 Recommendations

HDA's Emily Gelber-Maturo testified at a hearing September 9th and Barbara Otto submitted testimony at the joint hearing on September 20th on an 1115 waiver draft released the Illinois Department of Healthcare and Family Services. The waiver draft details a proposed overhaul of the behavioral health delivery system. Proposed expanded Medicaid benefits extend from care coordination in health homes to pre-tenancy services for supportive housing.

Recommendations to improve our 1115 Behavioral Health Transformation Waiver:


What’s an 1115 waiver?

Recently, the state proposed an ambitious plan to transform the Medicaid behavioral health system in Illinois. As part of its plan, the state proposes to use an 1115 waiver which would allow certain federal rules to be used so that federal funds could be used in ways that are otherwise not allowed. The catch is that the state must keep all efforts budget neutral for the federal government meaning that services provided have to be equal to what the feds would have spent within the state without the waiver.

The state plans to use both the 1115 waiver and state plan amendments to realize its transformation plan

As a reminder, Medicaid is paid for jointly by both federal and state funding. Illinois has proposed several things within this waiver, some of which will be allowed through the waiver, and others that will be included in state plan amendments. State Plan amendments are used to change program policies, benefits, or operational approaches of the Medicaid State Plan for Illinois. 1115 waivers and state plan amendments both change the way that Medicaid is delivered, but there is a significant difference between the two. The 1115 waiver is a demonstration that will last five years and allow the state to try new ideas within Medicaid that are not necessarily permanent, and can target certain populations. By contrast, the state plan amendment codifies (into law) Medicaid services that apply across the State. The 1115 waiver and state plan amendments will be used together to transform the Medicaid Behavioral Health delivery system.

Expanded benefits and new initiatives

The long-term vision for Illinois’ behavioral health system as articulated in the Behavioral Health Transformation 1115 waiver draft deserves applause. It includes a commitment to addressing social determinants of health, and expanding the Medicaid benefit package for people with serious mental illness and substance use disorders.

Expanded benefits proposed in the draft waiver include supported employment services and pre-tenancy supportive housing services, and new initiatives such as loan forgiveness and training for providers, integrated behavioral health homes, and expanded use of telemedicine. There’s even more, if you would like to read the draft yourself.

Recommendations for the transformation of the behavioral health system in Illinois

With any great system transformation, we need to contend with the realities of the short term. In order to implement many of the benefits and initiatives proposed in this waiver, we need to address systemic capacity, clarify roles of payers and providers, as well as improve infrastructure and accountability.

Invest in Mental Health Workforce and Infrastructure

Illinois would be wise to use the waiver to make much needed strategic investments in workforce and infrastructure in the short and long term. In order to enhance access to services and reduce unnecessary expenditures, prioritizing the assessment and diagnosis of mental illness and substance use disorders outside of the Emergency Department, the most expensive entry point to the health system, is paramount. Assessment and diagnosis should happen in community and outpatient settings. Because eligibility for services proposed in the waiver is closely tied to diagnoses, Illinois’ workforce challenges must be adequately addressed. Without much needed workforce improvements, the work simply can’t be done, and Illinois will fail to take full advantage of services promised through the proposed waiver.

Further, while the services are critical to proposed cost savings, Illinois needs enough providers, who are paid enough to cover their costs. This is not the current reality. Illinois needs rate reform for behavioral health providers, as well as reform to allow providers to work at the top of their license. Loan forgiveness and training, as described in the 1115 waiver draft, by themselves, are simply not enough. Though the waiver does reference expanding telehealth, which will likely help increase access to care, adequate rates are still needed to pay a provider on the other end of the screen.

The state should incorporate Medicaid infrastructure dollars to allow providers to keep pace, build capacity to bill, contract, and hire to provide services. We need to make sure that providers are sufficiently armed to do what is expected and best within their roles by investing in the infrastructure of the behavioral health system.

Clarify Roles of Providers and Payers

The waiver as drafted needs greater clarity on the roles of Managed Care Organizations vs. the roles of providers. As currently crafted, it appears the State is outsourcing a good deal of responsibility to MCOs and that Managed Care Organizations will be expected to implement service delivery. But the problem is that MCOs are payers, not providers. When the waiver addresses implementation of health homes and subsequent creation of a state plan amendment, providers and other stakeholders must be at the forefront of designing them. We don’t call our MCO when we need care, we call our doctor because that’s where the expertise lies.

Establish an Illinois Behavioral Health Transformation Team

In line with providing greater clarity of roles, the State needs to remain accountable for service delivery. The State should establish an Illinois Behavioral Health Transformation Team, comprised of stakeholders representing providers, advocates, and consumers, to provide guidance on the implementation of the waiver. With our state at a crossroads, operating with limited resources, taking advantage of the time and expertise of smart, dedicated, caring providers, advocates, and consumers, can help to shape the long-term transformation envisioned within this demonstration waiver. Advocates and others stand ready to help.

This waiver proposal contains several promising elements, but more is needed. The State must have a commitment to:
  • Increase capacity in the short term with Medicaid infrastructure investments and rate reform
  • Clarify roles - to make sure the right people are doing what they are best suited to do
  • Create responsive mechanisms for accountability

Without this, all the good ideas within this proposal will lack the critical support necessary to transform our behavioral health system for the better.


Emily Gelber-Maturo
Associate Director, Strategic Health Initiatives
Health & Disability Advocates
Blogger Tricks

Monday, July 25, 2016

Consumer Alert for Individuals and Employer Groups Insured by Land of Lincoln Health

Land of Lincoln Health insurance coverage will end for consumers as of October 1, 2016.  Land of Lincoln is no longer offering health plans for individuals on the Federal Health Insurance Marketplace (HealthCare.gov). Land of Lincoln has also stopped offering health plans for employer groups. Please note: it is very important that until October 1, 2016, consumers and employers must continue paying premiums.

Below is an excerpt from the Land of Lincoln Health website instructing consumers and employer groups on coverage options:

IL Department of Insurance Director Dowling has been working with the Centers for Medicare and Medicaid Services (“CMS”) for purposes of having a special enrollment period opened in order to allow individual insureds an opportunity to obtain replacement coverage during 2016 on the Federal Health Insurance Marketplace (HealthCare.gov). CMS will provide Land of Lincoln individual insureds with a special enrollment period (“SEP”) due to a loss of Minimum Essential Coverage (MEC).

Under this SEP,individual insureds have two options:

  1. Individuals may report their upcoming loss of MEC to the Marketplace from August 2, 2016 through September 30, 2016 and enroll in a new plan for coverage commencing on October 1, 2016; or
  2. Individuals may report their recent loss of MEC to the Marketplace from October 1, 2016 through November 29, 2016 and enroll in a new plan for coverage commencing on the first day of the following month.

It is important that individual insureds take note that if they enroll in a new plan on the Federal Health Insurance Marketplace prior to their loss of MEC they will have no gap in coverage or any financial assistance they’re receiving, but that if they wait until after they’ve lost MEC to enroll in a new plan there will be a gap in their health insurance coverage and any financial assistance they’re eligible for.

Employer groups should work with their agent or broker to explore their options. If you are an employer group that enrolled in a Land of Lincoln plan on the open market, please work with your agent or broker. Questions for Small Business Health Options Program (“SHOP”) customers can be directed to the call center for the SHOP Marketplace,which is part of HealthCare.gov, at 1-800-706-7893 (TTY711) Mon-Fri, 9 a.m. to 7 p.m. (ET). Agents and brokers may also use this number.

IT IS IMPORTANT THAT LAND OF LINCOLN INSUREDS CONTINUE TO RECEIVE HEALTHCARE SERVICES WITHOUT INTERRUPTION FROM LAND OF LINCOLN PROVIDERS. PROVIDERS WILL BE PAID FOR SERVICES DELIVERED TO LAND OF LINCOLN INSUREDS UNDER THEIR PROVIDER AGREEMENTS. CLAIMS FOR SERVICES SHOULD BE SUBMITTED AS USUAL FOR PAYMENT. PROVIDERS SHOULD NOT REFUSE SERVICE TO INSUREDS.

If you are denied services from a Land of Lincoln provider, please notify the Illinois Department of Insurance. Please call the Consumer Assistance Hotline at (866) 445-5364, and then submit your complaint in writing. Complaints may be submitted in the following ways: Keep your originals and send only copies of information. For a printed copy of the Department’s complaint form, contact the Consumer Assistance Hotline at (866) 445-5364. When your complaint is received, a file number will be assigned and you will be sent written notification of that number. Please refer to the complaint file number when you call or write to the Department. To read the entire Land of Lincoln Health notice, visit their website and read their alert.

Thursday, July 14, 2016

Illinois Needs to Protect Consumers in Wake of Land of Lincoln Debacle

The liquidation of Land of Lincoln Health is just the first of mounting hurdles for Illinois consumers and small-business owners shopping for health insurance coverage in the Affordable Care Act marketplace.

Not only do Illinois consumers wait longer than others across the country to see annual rate increases, but they also have fewer resources to help navigate the marketplace. The state's budget morass means the two state agencies charged with protecting consumer interests and helping consumers connect with coverage options—the Department of Insurance and Get Covered Illinois—are underfunded and ill-prepared to serve the public.

Who will protect consumers' interests in the demise of Land of Lincoln? We keep hearing that the state's insurance department doesn't have the staff to provide information on rate increases to the public until Aug. 1 (even though the department received them from insurers in April). If regulators can't meet the requirements of the ACA in a timely manner, how will they manage the liquidation details for Land of Lincoln? Can consumers count on them to answer critical questions about their now-defunct Land of Lincoln plans?

Questions like: Should I keep paying my premiums to Land of Lincoln? (Yes, you should if you want to be eligible for the special enrollment period plan holders will be offered.) Will I be able to find another plan with my providers in the network at the same price point? What happens if I already met my deductible with Land of Lincoln? Will that carry over to the new plan? And, who will help me find a new plan? Because Get Covered grant funding to help consumers is gone, and insurance carriers reduced or eliminated broker commission for working with clients, Illinois consumers are left with fewer resources when faced with complex health insurance decisions.

We should all be watching how the Department of Insurance addresses the needs of Land of Lincoln policyholders. When Blue Cross & Blue Shield narrowed its networks offered in the marketplace, thousands migrated to Land of Lincoln because of its broader networks with academic medical centers like the University of Chicago. The loss of Land of Lincoln leaves consumers and small-business owners worrying about continuity of care—for themselves and their employees.

This development ensures one thing for the upcoming open enrollment season: Illinois consumers and small businesses will have even less choice, and fewer affordable options that cover a broader network of health care providers.

How the Department of Insurance responds to this crisis is important for all Illinois consumers. We only hope the Rauner administration redirects resources to make sure the Department of Insurance can do its job and do it well.


Barbara Otto and Michelle Thornton Health & Disability Advocates
Reprinted with permission from Crain's Chicago Business

Tuesday, June 14, 2016

NOTICE Act Could Do More for Patients


Starting August 6th, the Notice of Observation Treatment and Implication for Care Eligibility Act, or NOTICE Act, will go into effect. This new law requires hospitals to give written and verbal notice to Medicare beneficiaries who have been on observation status for more than 24 hours.

What is observation status? 

In a nutshell, observation status is a term hospitals use to bill Medicare. Observation status is based on a doctor’s medical determination. Doctors place patients on observation status if their condition is not serious enough for inpatient admission status, but still requires monitoring in case health worsens.

The NOTICE Act is a step in the right direction because patients are often unaware of their observation status or its potential consequences. Prior to the NOTICE Act, the only way to know your status was to ask. Part of the reasoning behind the law is that beneficiaries get hit with serious financial consequences including higher than expected hospital bills and that Medicare won’t cover skilled nursing care needed after discharge from the hospital. However, the law could do better to prevent those consequences.

The issue for many patients is that being on observation status also means they are classified as an outpatient, not an inpatient. That means that rules for Medicare Part B (outpatient services) and D (prescription medication coverage) apply to their hospitalization rather than part A (inpatient).

To understand this better, here is a chart comparing estimated costs. Let’s say a patient stays at the hospital for 4 days, and the care provided ends up costing $10,000. Keep in mind that costs can vary greatly depending on the type of care provided during that time.


Oftentimes, Medicare beneficiaries learn about their observation status when arranging for the skilled nursing facility care they need after discharge. These patients make the very valid assumption that because they are wearing hospital gowns, in a hospital bed, eating hospital food, meeting with nurses and taking tests administered by doctors that they are an inpatient. They learn their actual status, and its consequences, too late and have little recourse.

How could the law be improved?

An appeal process is needed.
The NOTICE Act ensures people know about their observation status and the financial consequences of this determination. And that’s it. They don’t know the medical reasons a doctor made the decision and they aren’t given any avenues to appeal this determination. Patients will be informed of their observation status and the possibility of higher medical costs, but have no recourse to fight the decision.

Use plain-language in the notice to ensure comprehension. 
The Medicare Outpatient Observation Notice, or MOON, used to inform patients about their observation status is not written using easy-to-understand language. In its current form, the MOON is written for a 12-grade reading level, a break from the common practice of writing consumer materials for no more than an 8th grade reading level.

Do you agree Medicare patients deserve more?

Tell the federal government. They are asking for your comments right now in response to the proposed rules. You can use this comment template or submit comments on your own. Submit your comments with these simple steps:

  • Go to the website where comments are submitted. Enter the phrase "Medicare Program: Hospital Inpatient Prospective Payment Systems" in the search box. The first hit will be the rule you want to comment on. Click the "Comment Now!" blue box. 
  • Use our comment template to show how people you know have been hurt by observation status and why changes need to be made by including personal information where indicated with yellow highlights. Adding specific examples of real people makes your case more compelling.
  • You can also write your own feedback directly in the comment box.

Go ahead, make your voice heard! The greater number of people that speak up, the more likely changes will be made.

How can you get ready? 

While the law could be improved, it will be implemented August 6th. Prepare for the changes by getting informed:
Going to the hospital is already stressful. Deciphering complex notices, understanding jargon and dealing with unexpected medical bills increases the strain. Armed with knowledge, you can act as a more effective advocate for yourself, your clients or patients, and loved ones so they can focus on their health and recovery.

Bryce Marable
Health Policy Analyst
Health & Disability Advocates

Wednesday, May 18, 2016

Health Care Changes for Small Businesses in 2016

It’s been about six years since the passage of the Affordable Care Act, but some provisions of the health care law that can improve health care options for small businesses are still being implemented – like employee choice. By learning about this addition and other aspects of the law, small business owners can empower themselves to make the best decisions regarding health coverage for themselves and their employees. In many ways, health care options for small businesses are remaining the same this year. For instance, the Small Business Health Options Program in Illinois will continue offering an array of cost-competitive insurance plans from which employers can choose. And as always, qualified small businesses that purchase health insurance through SHOP may receive federal tax credits to help offset the cost of coverage.

Employee Choice, a Positive New Change

There are several new features of the law being implemented this year, though. One of the biggest and most promising changes is the implementation of employee choice, which is now available in every state. Employee choice allows small business workers to choose from a number of plans from different insurance carriers. Under employee choice, workers choose which carrier they’d prefer to use, instead of business owners choosing for them. This option plays a key role in distinguishing SHOP from the outside health insurance market, and it’s popular among small business owners. In fact, Small Business Majority’s polling found two-thirds of small employers believe allowing employees to choose among multiple carriers is an important element of the health care marketplaces.

While employee choice is a great development for small businesses, options under Illinois’s employee choice program aren’t as robust as they could be. In some parts of Illinois, only one or two insurance providers are participating in SHOP. While employers can still choose different levels of coverage from participating providers, more providers will need to participate to boost options for small businesses.

Taking Advantage of the New Opportunities 

If your business has fewer than 51 full-time employees, you can enroll in SHOP at any time during the year to take advantage of employee choice. In order to begin the enrollment process now, entrepreneurs should visit www.getcoveredillinois.gov or the National Association of Health Underwriters to contact a health insurance broker who is trained and certified to enroll small businesses for SHOP Marketplace plans. Brokers are well-versed in the ins-and-outs of the ACA, and there’s often no extra cost to utilize their services.

While 2016 offers changes in Illinois’s small business health insurance landscape, small business owners shouldn’t be concerned. Changes like employee choice are a step in the right direction for entrepreneurs. The best bet is for employers to arm themselves with information; that way, they can choose health coverage that maximizes benefits for their business.

Geri Aglipay
Outreach Manager, Midwest Region and Greater Chicago
Small Business Majority 

Friday, March 11, 2016

The Budget Crisis Impact on Centers for Independent Living

Like many other human services providers, the Illinois Network of Centers for Independent Living
(INCIL) is being hit hard by the Illinois budget crisis. Access Living is one of the 22 Centers for Independent Living (CILs) in Illinois. The CILs serve 95 of the 102 counties in Illinois. INCIL’s Executive Director, Ann Ford, shared the following, based on reports from 19 of the 22 CILs, which employ between 450-500 people:

•39 CIL staff have been laid off state wide since July 1, 2015
•93 CIL staff are working reduced hours because of furlough days, experiencing pay cuts ranging from 20% to 40%
•21 vacant CIL positions remain unfilled throughout the state (delaying hires is one way to save money)
•Two CILs are in the process of closing satellite offices
•All CILs are restricting travel, including in some areas travel to consumers’ homes
•At least four CILs are developing contingency plans to close in the event funding doesn’t come within the next six months
•It is difficult to determine how many consumers have gone without services. A reasonable estimate would be 800 to 1,000 people statewide
•The impact includes the enormous emotional toll this issue is taking on staff at all CILs, as they take on increased workloads while losing a portion of their income.

The CILs are doing the very best they can to continue to provide services to empower people with disabilities to live as independently as possible in the community. Quite often they are a real lifeline for many people with disabilities. During this difficult state budget crisis, know that your local CILs have been doing everything they can to show why their programs matter to the local community. The CILs are still waiting for just over $4 million in FY 16 budget money for CILs from the state of Illinois, as well as other funds specific to certain disability programs they run.

While Access Living has been holding on, we are very concerned about our fellow CILs at risk of closing. Please contact Ann Ford at annford@incil.org if you have questions about the network; you can also check www.incil.org to see what CILs serve your area. We also urge you to contact your Governor, state senators and representatives to urge them to work on a budget solution ASAP so that disability services are not further impacted.

Ann Ford
Executive Director
Illinois Network of Centers for Independent Living 

This was originally shared as an Advocacy Alert from Access Living.

Friday, February 19, 2016

Key Lessons from Health & Medicine’s Budget Forum

On January 15, 2016, Health & Medicine hosted a meeting of The Chicago Forum for Justice in forum proceedings notes as a reference guide for the forum’s content.

Our notes are written as a summary and while they can’t fully capture the presentations, videos of each of the five mini panels are available on the event webpage, as are slides from speakers who used them in their presentations. We thank CAN TV for recording, editing, and sharing videos of the forum, extending the potential impact of our panelists’ presentations.

We hope these notes will be useful for advocates and policymakers seeking to understand issues related to the budget, think about potential revenue solutions, and consider strategies, framing, and narratives likely to advance progress.  Health & Medicine will be convening a small group soon to review the forum proceedings and discuss next steps for our work on this critical area, which we’ll share on our website.

While the budget problems and solutions are more complex than this, here are some main points that have emerged for me from conversations and from the presentations and discussion at the conference:

  • Illinois lacks sufficient revenue, which represents a structural budget problem, priming the State to have recurring budget shortages and hampering our ability to provide Illinoisans with the public services they need and want, thus harming the health of the public, and disproportionately harming vulnerable communities.
  • The structural budget problems have several potential revenue solutions, including a progressive income tax structure and efforts to ensure corporations pay their fair share, both of which are more equitable than our current system and would better grow revenue in proportion to the size of Illinois’ economy.
  • State elected officials are collectively responsible for passing a budget and using a selection of revenue solutions that will help preserve and improve the vital health, social, and education programs and services that support people’s health and Illinois’ economy.  Inaction on the structural revenue shortages that Illinois faces is an unacceptable abdication of the governing duties our public officials share.

Of course, these salient points are based on a range of facts and history about Illinois’ taxes and budgets, beyond the scope of this post.  A significant amount of such relevant detail is covered in the forum proceedings notes, as well as the slides and videos on the event webpage (linked to above).

Also, related to this subject, Health & Medicine’s Executive Director, Margie Schaps, had two letters focused on Illinois’ budget published in the last couple of weeks:



Wesley Epplin
Director of Health Equity
Health & Medicine Policy Research Group