The Myth of Expansion and Wait Lists

Pence; Cruz; people waiting for services.

When you're trying to get your bill passed, it makes all the difference to make sure you have a "common sense" message that stresses that, without the bill, a certain horrible thing is bound to occur.

Such is the case for those leaders saying that Medicaid expansion funds are being spent at the expense of the people with disabilities on wait lists for Medicaid services.

"Obamacare has put far too many able-bodied adults on the Medicaid rolls, leaving many disabled and vulnerable Americans at the back of the line." said Vice President Mike Pence at the National Governor’s Association meeting, adding “It’s true, and it’s heartbreaking,” The same argument was made by Sen. Ted Cruz earlier this year.

As with many a faulty argument, its simplicity makes it sound valid. But if you know how Medicaid works, it's a lot like saying "red is a color, and blue is a color, so red is blue." (We wish!)

It’s true that there are Medicaid wait lists for people with disabilities.

And it's true that states have expanded Medicaid.

But there's no connection between funds spent to cover the new Medicaid expansion group and the wait lists experienced by people who were already previously eligible for Medicaid.

Wait lists exist for certain programs due to how those programs were initially constructed. In Illinois, Medicaid began covering services for adults with developmental disabilities in the late 1990s; children were covered in 2007. Both programs were created using Medicaid waivers which, by their very nature, allow states to limit enrollments based on a variety of factors – mostly they do it to keep costs down and better track program performance. Illinois’ waivers were created with wait lists in place years before the ACA became law.

The Kaiser Family Foundation did a comprehensive analysis of this very issue, looking at the impact of Medicaid expansion on state wait lists for home and community-based services. You know what they found? In 2015, the first year of expansion, more non-expansion states had increases in their wait lists than expansion states. And the rate of increase in wait lists was 2.5 times higher in non-expansion.

So, contrary to the "common sense" argument, the exact opposite is true: States that failed to expand their Medicaid programs saw less federal funding enter their state budgets, and thus had to bear a greater share of their Medicaid costs – leading to service reductions, cuts to provider payments, and limits on the types and amount of care provided and, yes, longer wait lists.

The threat to home and community-based services – and other Medicaid programs – is not Medicaid expansion. It is the proposed cuts to Medicaid that will undo all the health care gains, vital programs, and economic benefits brought about by 50 years of state-federal partnership in Medicaid, and enhanced by the Affordable Care Act.

The American Health Care Act Hurts

The American Health Care Act (2017) is a radical step back from progress made to provide health insurance for all Americans.  It breaks the federal government’s fundamental compact, where the federal government promised to pay its fair share in providing health coverage to the nation’s most vulnerable people. That includes the working poor, people with disabilities, older adults, and children.

The AHCA makes it harder to access health insurance

The Affordable Care Act provides support, through tax credits and subsidies, for millions of the working poor, Americans who earned too much for Medicaid but who cannot afford the premiums for individual insurance. The AHCA shatters that reality by promoting a system where financial assistance is slashed and fewer people will be able to afford coverage.

The AHCA moves financial assistance from the poor to the rich
The AHCA will punish the working poor. The current system of tax credits and subsidies will change radically. Tax credits based on income, and other factors, would become a flat amount based only on a person’s age. The Congressional Budget Office report details how a 21 year old living at 175% of the federal poverty level would see her current tax credit drop from $3,400 to $2,450. Cost-sharing subsidies to help pay out of pocket costs would  be eliminated, placing further burden on her and the millions living near the poverty line who need these critical supports to pay for health insurance.

The AHCA makes coverage more expensive for older adults

The AHCA is particularly hard on older Americans.  It allows insurance companies to charge seniors 67% more for their insurance premiums than what they would be charged today. The AHCA does this by giving insurance companies the right to charge seniors 5 times more for their coverage than they would for someone in their 20s. Even though the Republicans have proposed age rated tax credits to help seniors pay for their insurance, it won’t be nearly enough to help cover these increased costs.

Adding to these financial burdens, the AHCA also makes insurance more expensive if you have a gap in coverage. No matter how you look at it, the AHCA adds burdens to the working poor and older Americans instead of providing the support so many need.

The AHCA breaks the promise to provide care to the most vulnerable
The American Health Care Act breaks the federal government’s 50 year compact with the states in assisting in the cost of providing health coverage to low-income people, including children, pregnant women, people with disabilities and adults. Medicaid is the underpinning of the nation’s health care system; it is the safety net for 68 million Americans and financing the program has always been a shared responsibility between the federal government and states.

The AHCA siphons billions in federal dollars out of the Medicaid program, leaving states to pay up and make cuts

The CBO estimates that the AHCA would cut the federal government’s support for Medicaid by $880 billion, forcing states to accept a fixed funding formula for the Medicaid program.  This will leave states responsible for a larger percentage of their Medicaid costs. Since states must balance their budgets annually, reductions in federal funding will lead to state cuts in eligibility, benefits or payment rates.

The AHCA also allow doesn’t grow this set amount at a rate equal to Medicaid growth rates, which means states will have less money each year as expenses increase and funding doesn’t keep up.

The AHCA is a bad deal for Illinois, where Medicaid dollars are already stretched

Medicaid finance reform is happening at a time when Medicaid covers 1 of every 5 births, and 1 in 4 lives in Illinois. Medicaid spends nearly 30% of its total expenditures on services and supports that help people live independently in their communities. Illinois has been seeking a waiver from the federal government to bring in more dollars for much needed behavioral health services and supports. Illinois already has some of the lowest payment rates in the country.

Changing the Medicaid funding formula would dramatically impact Illinois’ ability to maintain current Medicaid funded services and supports which the state has already deemed inadequately funded. Further cuts to federal funding for the state would devastate an already ailing health delivery system.

Illinois can’t afford the AHCA

The AHCA hinders access to health insurance, curtails financial assistance to the most vulnerable, raises costs for older adults, and leaves our state in an even worse fiscal situation. Illinois residents can’t afford it. Our state can’t afford it.

We urge the Illinois Congressional delegation, and Governor Rauner to aggressively push back on the AHCA.

Related reading

• Analysis from Sen. Durbin's office: TrumpCare: Less for More
• Vox: The Republican plan to slash Medicaid, explained
• Washington Post: Sleeper issue of Medicaid’s future could prove health-care plans’ stumbling block
• Congressional Budget Office: report
• House Ways & Means Committee: Section by section summary
• Commerce & Energy Committee: Section by section summary

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

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:

• Online at http://insurance.illinois.gov/Complaints/file_complaint.asp
• By email at consumer_complaints@ins.state.il.us.
• By fax to (217) 558-2083
• By mail to 320 W. Washington Street, Springfield, IL 62767

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.

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

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Reprinted with permission from Crain's Chicago Business

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:

• Learn the basics of the new rule and what to expect from hospitals. 
• Familiarize yourself with words and terms often used when talking about observation status. 
• Know how to obtain prescriptions for drugs you need to manage chronic conditions 
• Read the notice, which will be standardized, before hospital staff hand it to you. 

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

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