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.
Stay the Course with SHIP
State budget cuts are not the only threat to seniors and people with disabilities. Federal reductions may be coming as well.The US Senate is considering a 42% reduction in funding to the State Health Insurance Assistance Program, which counsels seniors and people with disabilities on their Medicare health plan options. SHIP funding would drop to a mere $20 million, diminishing the numbers and quality of the SHIP workforce.
SHIP is Necessary Now More than Ever
Every day, 10,000 Americans become eligible for a Medicare system that is increasingly more complex. Medicare beneficiaries pay the price for the confusion:
- 700,000 Medicare are paying the Part B Late Enrollment Penalty because they missed the deadline to sign up,
- Medicare Part D beneficiaries in Low-Income Subsidy are often unaware of lower priced options,
Poorer Trained, Less Helpful
The federal cuts would compromise SHIP's ability to adequately serve everyone who needs help. One and a half million fewer people would receive assistance. Moreover, most of the SHIP counselors are volunteers who donate almost two million hours of help. Cuts could also result in reduced or compromised volunteer training, which increases the risk of erroneous advice and reduces the quality of services beneficiaries receive.
No Substitute
Those in favor of the cuts claim there are less costly alternatives to SHIP. This is untrue. The materials suggested as substitutes, 1-800 Medicare, Medicare.gov and the Medicare Enrollment Handbook, all list SHIP as a resource for people to use with additional questions. A brochure is no substitute for one-on-one, expert advice.
What You Can Do
Tell your Senator to fight cuts to the SHIP program, that your family, friends, even you personally, benefit from the free services that SHIP counselors provide. It's easy:
- Send our Senators this model letter drafted by the National Council on Aging. Just copy and paste the text into their contact forms: Sen. Kirk's form Sen. Durbin's form (remember to sign your name!)
- Tweet your advocacy with this graphic we created – and tag @SenatorKirk @SenatorDurbin
- Feel free to personalize with your story, or the story of loved ones. Personal stories make a difference!
Bryce Marable MSW
Health Policy Analyst
Health & Disability Advocates
Medicaid: The Long-Term Costs of Short-Term Savings
The Rauner Administration’s decision to cut $1.5 billion in Medicaid spending to balance the state budget is like the proverbial cutting off the nose to spite the face. Central to the Rauner “plan” is to tighten eligibility for people with disabilities and older adults to access long-term care services and supports (LTSS). The Administration is proposing to increase the minimum eligible level of something called the “Determination of Need” score. The DON eligibility process determines how many hours of assistance an older adult or person with a disability can get in order to stay in their own home.
Where the costs go
What happens to those costs? They get passed on to hospitals and urgent care providers, taxpayers (in the form of other social programs), and family members who are either under-employed or unemployed in order to help a loved one.Persons who are aging or living with a disability require access to long-term care to live independently, and do not have other options to find support for their medical needs. Reducing access to home and community-based services means individuals who are at risk of living in more costly nursing facilities become desperate to find any help with activities of daily living, through friends or family members who may be able to assist with financial or personal healthcare needs.This is easier said than done, however, as family members or friends who can volunteer to assist are often being forced to choose between their own employment and assisting their family member or a loved one. Creating a further burden is Rauner’s proposed elimination of funding for developmental disabilities respite care, a program that provides assistance for people who care for persons with disabilities,Medicaid is not only the payer of last resort, but the program of last resort, for persons with significant medical needs – paying for as much as 49% of the country’s long-term care services.How to save the state money
Keeping people out of emergency rooms and nursing homes ultimately saves the state money. Progress Center for Independent Living released data showing that home services remove pressure from Medicaid spending on nursing homes, saving the state more than $17,500 per person, per year in the Home Services Program for people with disabilities.The cost savings for seniors in the Community Care Program are even greater, at more than $24,150 per person, per year. Consider the fact that the Home Services Program serves 30,000 people with disabilities, and the Community Care Program serves more than 80,000 people year round (based on the FY 2014 Public Accounting Report for both HSP and CCP from the Illinois Office of the Comptroller), and you have staggering numbers for cost savings. According to the Service Employees International Union, more than a third of people with disabilities now in the Home Service Program – some 10,000 people – will lose access to care in their homes, thereby creating a dependence on hospitals and institutions to address their long-term care needs. The Community Care Program will be losing more than 38,700 seniors.Debate surrounding the state budget should be aimed at taking concrete strategic actions, rather than cutting low-cost and money-saving programs. Governor Rauner appears bent on forging ahead despite opposition from the Illinois house and senate.The facts are clear. The cuts to the Medicaid budget are not cost-effective, and they isolate vulnerable populations. The notion that diminishing social safety nets is a good way to control state budget deficit is at best misguided, and we need to move on from this policy.Related reading:
- Community-Based Long-Term Services & Supports at Medicaid.gov
- Gov. Rauner's Health Benefits for Workers with Disabilities site
- Kansas to break new ground in demeaning the poor? column by Michael Hiltzik in the LA Times
- ACA, Medicaid and Unintended Consequences for People with Disabilities post at the IHM blog
- Disability Rights Advocates Deliver Coffin To Rauner, Decry 'Deadly' Human Services Cuts in Progress Illinois
What Really Happens After Enrolling in Medicaid Managed Care?
Health & Disability Advocates (HDA) is monitoring the rollout of the Medicare-Medicaid Alignment Initiative (MMAI) and has heard from frustrated case managers working with consumers who are confused about the enrollment process and their rights. In response, HDA developed an enrollment timeline that explains what new enrollees can expect from Managed Care Organizations (MCOs) and plan representatives upon enrollment. To produce the timeline, HDA researched the MMAI demonstration contract developed by the State of Illinois and approved by the Center for Medicare and Medicaid Services (CMS) HDA also solicited input from health plans on whether their on-the-ground practices were accurately reflected in the timeline.
The finished product outlines important points for case managers and their clients to consider.
One Day Changes Everything
Consumers who are enrolled in a managed care plan after the 12th day of the month will not see their coverage start until the month after next. This is relevant for consumers choosing a specific managed care plan in order to see a particular provider or specialist in that plan’s network. Submitting paperwork after the cut-off date means consumers would have to wait longer than expected for necessary treatment. Helping consumers submit required documents in a timely manner can guarantee they are connected to the medical treatment they need, which promotes continuity of care.
Stratification Sets Up Future Contact Standards
Once enrolled in a plan, all enrollees can expect to complete a Health Risk Screening within 60 days. The screen collects information on the enrollee’s physical and mental health conditions and identifies their current medical providers. This is what IlliniCare’s Health Screen looks like. Health plans use the screen to establish intensity of services and frequency of contact with Care Coordinators by stratifying the enrollee as low, moderate or high risk.
Enrollees stratified as low risk will receive annual follow-ups from their Care Coordinators while those stratified as moderate or high risk will have quarterly follow-ups. Moderate and high risk enrollees will also complete a Health Risk Assessment and create an Individualized Care Plan within 90 days. These enrollees will help form their own Interdisciplinary Care Team of healthcare providers that meets quarterly to review the Individualized Care Plan.
The Care Coordinators’ Role
Care Coordinators focus on enrollees’ healthcare needs by connecting them to necessary tests, doctors and treatment. They also facilitate information sharing among providers by leading the Interdisciplinary Care Team. Addressing enrollees’ medical needs is their priority. Care Coordinators direct less attention to linking enrollees to social supports, like housing and public benefits.
It’s also important for case managers to know that Care Coordinators must manage a substantial caseload of up to 600 enrollees. Caseloads include a blend of low, moderate and high risk enrollees, with each risk level weighted differently.
Understanding what a care coordinator can—and cannot—be expected to do is advantageous to case managers. When roles are clearly recognized, case managers know how care coordinators can be used as a resource. And in what instances an alternative referral would be more appropriate. This establishes a stronger professional relationship between case managers and care coordinators, which ultimately benefits the enrollee.
Case managers and Care Coordinators are on the front lines of healthcare reform and fostering solid working relationships between these two players will be a critical component of the success or failure of these efforts. Knowing what case managers and their clients can expect from managed care plans can lay the foundation for a strong relationship that supports the health of individuals while also furthering the goals of healthcare reform.
Bryce Marable MSW
Health Policy Analyst
Health & Disability Advocates
People With Disabilities Who Opt Out of ‘Voluntary’ Wellness Programs Will Pay the Price, and the EEOC’s Okay With That.
The following originally appeared on the American Civil Liberties Union's Speak Freely Blog.
Voluntary wellness programs at work can provide benefits to employees, but employers are increasingly adopting “voluntary” wellness programs that unfairly burden workers with disabilities the most of all. Worse, the Equal Employment Opportunity Commission seems to think that’s okay, undermining core antidiscrimination protections it used to defend.
Here’s why.
ACA, Medicaid and Unintended Consequences for People with Disabilities
People with disabilities who are eligible for healthcare through Medicaid may experience painful gaps in coverage during transitions. There are groups of people with disabilities that are particularly vulnerable: those who need long-term care services, those who apply but are not yet found eligible for SSI in 209b states with expanded Medicaid and youth transitioning to the adult system.
Long-term care services and supports, such as personal assistance services or durable medical equipment, are critically important to some people with disabilities. Medicaid packages for people with blindness and disabilities, or AABD or SSI Related Medicaid, offer comprehensive coverage, including long-term care supports and services. For those who need them, these services are a lifeline to independence, living in the community and employment. Either not affordable or available through the private insurance market, Medicaid has been the sole access point for people with disabilities who need long-term care services. The Adult ACA Medicaid group, or expansion group, is a Medicaid program that may or may not provide an individual with long-term care services in any given state.
209(b) Expansion States Facing Challenges with Transitions
One key difference across states is the option to automatically provide SSI Related Medicaid to recipients of the federally-administered state supplementary payments though the Supplemental Security Income (SSI) program. Ten states use at least one eligibility criterion that is more restrictive than the SSI program for Medicaid eligibility and are referred to as 209(b) states. This means that an individual in these states who applies and is found eligible for SSI must make a separate application for Medicaid coverage.
The following states are currently 209(b) states: Connecticut, Hawaii, Illinois, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma and Virginia. All but Missouri, Oklahoma and Virginia have expanded Medicaid eligibility through the ACA.
Limited Access to Long-Term Care and Providers in the ACA Adult Group
Because many SSI applications take longer to process than Medicaid applications, people with disabilities can frequently be found eligible for ACA Adult Medicaid while waiting for SSI eligibility to be approved. While this group of individuals who have been approved as ACA Adult Medicaid eligible has access to healthcare, they may not have access to long-term care services.
Once SSI eligibility is approved, however, the beneficiary is no longer eligible for the category of Medicaid (ACA Adult) they are currently receiving. When they are put into the correct category for coverage (SSI Related Medicaid), they are sometimes dropped from one health plan and put into another without their knowledge. The end result is a current Medicaid beneficiary who is denied or faces delayed access to long-term care services he or she should be receiving under SSI Related Medicaid, as well as potentially losing access to providers and being forced to reapply altogether.
In addition to the lack of access to needed long-term care services, people may also experience challenges related to accessing medical service providers. In some states, the integration of the ACA and managed care has vastly changed provider infrastructure, with managed care plans for SSI Related Medicaid offering different provider networks and services than ACA Adult Medicaid managed care plans.
Many individuals, especially those new to SSI Related Medicaid, will not be aware that they are in a different category until another action is taken, such applying for a Medicaid waiver service, attempting to contact their managed care plan or going to see their providers. Both of these issues can result from the timing of an individual’s Medicaid application and approval.
Youth with Disabilities Facing Challenges with Transitions
Youth with disabilities can also potentially face significant unintended consequences around access to appropriate healthcare coverage. Children with disabilities are found eligible for SSI due to a reduction in both Activities of Daily Living and Instrumental Activities of Daily Living. This means a youth can be eligible for SSI under a broader context of criteria, like an inability to socialize or play with others.
Adult disability determinations, by contrast, are made based on a disabling condition that impacts employment—not only current employment, any employment in the country that may be available to someone with such impairments. These are vastly different criteria.
As a result, many children are found eligible and begin receiving childhood SSI and SSI Related Medicaid. However, when they turn 18, they are required to meet the adult disability guidelines in order to remain eligible. Many children fail to meet those adult requirements and their benefits are terminated. Of those that are found ineligible when they turn 18, a number are later found to be eligible in further review or appeal processes. Because Medicaid waiver programs are available only to individuals who are current Medicaid recipients, a child may have waited years to be eligible for Medicaid waivers, be found eligible, only later to be denied eligibility for adult disability—which results in losing benefits under SSI Related Medicaid and SSI eligibility. If, upon later application, the individual is once again found eligible for both adult SSI and SSI Related Medicaid, he or she must now go to the back of the waiting list for the same waiver services previously lost under a youth determination. This can result in years without necessary, critical services and care.
Experiences in the States
Health & Disability Advocates conducted a short, informal survey of seven 209(b) states that have expanded Medicaid to learn more about how states identify people who are in the “wrong” eligibility category and the processes states have in place to prevent this from happening. With six of the seven states responding to the survey, HDA found that:
• Three of six respondents offer Medicaid provider packages that are different depending on whether you are in SSI Related Medicaid or ACA Related Medicaid.
• Three of the six responding states offer some variety of waivers to individuals even if they are placed in ACA Related Medicaid.
• None of the responding states have a formal process for coordinating information about individuals who transition eligibility from one service package to another.
• Four of six states are unaware of whether individuals have been improperly placed in the wrong Medicaid eligibility package; the remaining 33% have implemented trainings, but know that individuals continue to get placed into the wrong eligibility group.
• Five states (all but North Dakota) were not aware of specific alerts that notify the Medicaid beneficiary that their eligibility for one program has ended and another started.
Upon further contact, roughly half of the states were in the early stages of identifying the issue of individuals being inappropriately placed and noted a need to develop a process for re-engaging the beneficiary to get them connected to appropriate providers for maximized health.
Recommendations Going Forward
While states are currently uncertain about the scope and breadth of these issues, it is important to identify individuals who have fallen through the cracks and may experience a significant disruption in services and eligibility. At a minimum, requiring states to create an automated notification system for changes to eligibility would provide beneficiaries greater clarity and time to plan. In North Dakota, for example, individuals receive a notice as they leave eligibility under one Medicaid group and become eligible for another. Notice of and clear information about the ramifications of the change is critical.
Another recommendation for states is to look at integration of its systems and data tracking of disability populations. Data exchanges between the state and federal systems, along with the differing eligibility criteria among various programs, should make tracking persons with disabilities a high priority for states. Minnesota, for example, is developing a new integrated system with the capacity to match data sets to a broader context of information, such as employment status. This will greatly enhance the ability of the state to make sure that people with serious health needs receive the proper services and have access to the supports they need for the greatest possible independence.
Joe Entwisle, MS, CLCP
Sr. Policy Analyst
Health & Disability Advocates
People with Disabilities and the ACA
The Affordable Care Act (ACA) is making health insurance coverage more affordable and accessible for millions of Americans. With the passage of this law, individuals and families have more control over their care – especially individuals with disabilities. The ACA provides people with disabilities a basic protection – they can no longer be denied access to health insurance simply because of their health history.
Under the ACA, individuals like myself can no longer be denied health care because of a pre-existing condition. This is significant for the up to 129 million non-elderly Americans living with some type of pre-existing health condition such as asthma or diabetes, including 17.6 million children.
We have come a long way over the past year. All combined, in just one year, we’ve reduced the number of uninsured adults by 26%. Additionally, 76 million Americans with private health insurance are getting preventive services such as vaccines, cancer screenings, and yearly wellness visits for free. Finally, more than 7 million Americans are enrolled in the Marketplace and more than 8 million additional individuals are enrolled in Medicaid and CHIP, compared to last fall.
We have much to celebrate but there is work to be done. November 15 marks the beginning of the second enrollment period, which will run until February 15. The Administration is committed to ensuring that all Americans have access to coverage. The open enrollment period is a time for Americans already enrolled to re-enroll. It is also a chance for those without coverage to enroll for the first time.
Take a few minutes to watch Joey talk about what the ACA has meant for him and millions of others:
Associate Director of the White House Office of Public Engagement.