URGENT- 3 Day Medicaid STILL Matters Campaign-Get Your Story on the Record

The Senate is set to vote next week on the Graham-Cassidy bill, this is the most dangerous of the health care proposals that have been before Congress and it is on the fast track. Like previous proposals, this bill includes the per capita caps on the Medicaid program that would end Medicaid as we know it with a trillion dollar cut over two decades, and allows states to weaken consumer insurance protections such as the ban on pre-existing condition exclusion and the essential health benefit requirement.

The latest revisions to the bill INCLUDES the devastating cuts to the Medicaid programs that over 10 million people with disabilities rely on to live and work in their communities. The process that the Senate has been using since January to repeal and replace the Affordable Care Act has been out of regular order, with no committee meetings, public input or hearings. In a pathetic attempt to make an effort, the Senate Finance Committee has scheduled ONE hearing on Monday, September 25, 2017, details are here.

HERE IS WHAT YOU CAN DO:

Because not everyone will be able to attend the hearing to make their voices heard, The Arc of the United States will be collecting your stories to submit on Monday. The time is now to take action and tell your Senators what these devastating cuts will mean to you and your family and why MEDICAID MATTERS. Take a few moments before 9 AM SUNDAY EST to tell your Medicaid story HERE. We will hand deliver all the printed messages to the Senate Finance Committee on Monday, and send them directly to your Senators. So please act NOW, e-mails must be received by 9 AM EST on Sunday to be printed.

We want to show strong support for Medicaid from all over the nation, and get your story on the record. After you submit your story be sure to take action and contact your Senators to tell them to vote no on the Graham-Cassidy bill. If you have any questions please contact Nicole Jorwic at The Arc of United States: jorwic@thearc.org

The Arc Responds to Graham-Cassidy-Heller-Johnson Health Care Proposal

Architects of this bill are still ignoring the pleas of their constituents with disabilities

Today, U.S. Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), Ron Johnson (R-WI) and former US Senator Rick Santorum (R-PA) unveiled the latest attempt to repeal the Affordable Care Act. The Arc released the following statement in response:

“While this piece of legislation has a new title and makes new promises, it is more of the same threats to Medicaid and those who rely on it for a life in the community. The Graham-Cassidy-Heller-Johnson proposal cuts and caps the Medicaid program. The loss of federal funding is a serious threat to people with disabilities and their families who rely on Medicaid for community based supports.

“Many of the provisions in this legislation are the same or worse than what we encountered earlier this year, which shows that the architects of this bill are still ignoring the pleas of their constituents with disabilities. The talking points sugar coat it, but the reality is simple – under this proposal less money would be available despite the fact the needs of people who rely on Medicaid have not decreased.  The Arc remains staunchly opposed to legislation that includes per capita caps or block granting of Medicaid. We need Members of Congress to find a solution that actually takes into consideration the needs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of the The Arc.

The Arc Responds to the Violence in Charlottesville

Washington DC – The Arc released the following statement in response to the violence in Charlottesville, Virginia:

“Our collective hearts break after witnessing the hatred, violence, and innocent death that rocked Charlottesville, Virginia this past weekend. This hatred does not represent our America; it is a shocking betrayal of the values of our nation. We are sickened by the neo-Nazis and white supremacists who brought hate and violence into the streets, and appalled that President Trump chose to place blame not only on them, but on those who were protesting against this resurgence of evil in our society.  The counter protesters who stood up for the inclusion that America was founded upon are not responsible for what happened – it was those resorting to violence while spewing racist, anti-Semitic, homophobic, and islamophobic vitriol who were at fault.

“People with intellectual and developmental disabilities have faced decades of abuse, discrimination, and institutionalization.   We must not forget that the genocide perpetrated by the Nazis in Germany included among its targets those with disabilities, and that eugenic sterilization was practiced here in the United States.  The occurrences of this weekend remind us of dark times in our history, and of the hate and ignorance that fueled these deplorable actions. That hate was alive this weekend.

“Disability does not discriminate and people with intellectual and developmental disabilities are represented in all minority groups: people of color, immigrants, refugees, members of every religious group, and members of the LGBTQ community. We remain on the side of inclusion, on the side of our brothers and sisters in civil rights who were brutally attacked in Charlottesville,” said Peter V. Berns, Chief Executive Officer of The Arc.

Learning From Our Peers: Advice on Organizational Transformation From Those Who Have Done It

RRTC BriefAs more community-based providers of supports and services to people with intellectual and developmental disabilities (I/DD) strive to reinvent themselves to offer inclusive opportunities and keep up with Employment First, WIOA, CMS Final Settings Rule, DOJ’s application of Olmstead to employment, and expectations of the ADA generation, organizational leadership may find themselves wondering how to accomplish such a feat. Where’s the finish line? Where’s the starting block?

The Arc believes that people with intellectual and developmental disabilities belong in the community and have fundamental moral, civil and constitutional rights to be fully included and actively participate in all aspects of society. The Arc is pleased to be working toward finding and sharing information to support its chapters on their journeys toward community employment with leading employment researchers as a sub-grantee of the Rehabilitation Research and Training Center (RRTC) on Advancing Employment for Individuals with Intellectual and Developmental Disabilities, a project of ThinkWork! at the Institute for Community Inclusion at University of Massachusetts – Boston on a five-year National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grant aimed at employment of people with I/DD. As part of this collaboration, staff from The Arc co-conducted interviews with leadership from eight organizations which have transformed their employment service delivery from sheltered work to competitive community employment. A brief sharing advice from those interviews was recently released telling us to Commit. Plan. Engage. Implement.

The next step in this collaboration is an intervention aimed at service providers to aide them in transforming their sheltered workshop models to community-based employment programs. This intervention will provide best practice information and other resources to service providers via a comprehensive toolkit.

We are currently looking for chapters to participate in our intervention pilot this summer. The pilot will be six weeks in duration and will consist of reviewing the toolkit, preliminary planning and implementation of pertinent best practices, and providing feedback to The Arc national staff to ensure that the final version of the toolkit is useful and will best support organizations with implementing the conversion process. If you are interested in learning more or participating in the pilot process, please contact Jonathan Lucus, Director of The Arc@Work at: lucus@thearc.org or at 202.534.3706.

The Timeline Has Changed, But Threats to People with Disabilities in Senate Health Care Reform Efforts Remain

Washington, DC – The Arc released the following statement as Senate Majority Leader Mitch McConnell pulls the Better Care Reconciliation Act, and announces an upcoming vote on a repeal of the Affordable Care Act without an immediate replacement:

“Make no mistake – the Medicaid program and the home and community based supports that people with intellectual and developmental disabilities rely on to live independent lives were on the brink of destruction. As the disability community battled against this effort over the last several months, we have shown our strength, our power, and I thank each and every advocate who has stepped up in this fight.

“This is not over. As Senate Majority Leader McConnell considers his next steps regarding repeal of the Affordable Care Act, we are reminded of the 2015 plan to repeal and not replace the Affordable Care Act. The Congressional Budget Office analysis showed that under that proposal, by 2026, 32 million people would lose health insurance and premiums would double.

“We know there will be further threats in the future, which is why we remain vigilant in our advocacy efforts. Congress is already doubling down on slashing the Medicaid program – today, the House unveiled its budget resolution that includes sweeping changes to Medicaid, Social Security, and Medicare.

“This is going to be a long road, but one that people with disabilities, their family members, support staff, and friends will navigate together. We must unite and reject cuts that will take away the dignity and independence of people with disabilities. This is the civil rights fight of our time, and we will remain vigilant to protect all that has been built to ensure the inclusion and equality of people with intellectual and developmental disabilities in our society,” said Peter Berns, CEO, The Arc.

Emergency Weekend Medicaid Matters to Me Letter Writing Campaign – Deadline Extended!

The Senate is set to vote soon on the latest version of the Better Care Reconciliation Act. The latest revisions to the bill do NOT change the devastating cuts to the Medicaid program that over 10 million people with disabilities rely on to live and work in their communities. The time is now to take action and tell your Senators why Medicaid Matters to You and Your Family

Take a few moments to write a brief message about how Medicaid impacts your life. Please send those messages in the body of an email to Nicole Jorwic at The Arc of the United States: jorwic@thearc.org. PLEASE INCLUDE YOUR STATE IN THE SUBJECT LINE OF THE EMAIL. We will hand deliver all the printed messages to the Senators from your states this week. So please act fast, e-mails must be received by midnight on Wednesday, July 19 to be printed.

We want to show strong support for Medicaid from all over the nation, but we are particularly looking for letters from the following states:

  • Nevada
  • West Virginia
  • Alaska
  • Louisiana
  • Ohio
  • Arizona
  • North Dakota
  • Kansas

SSI Makes Allowances for Student Finances

By Mary L. Waltari, Esq., Special Needs Alliance

Students with disabilities and their families sometimes worry that the very process of becoming educated—with an important goal being increased economic independence—can reduce SSI (Supplemental Security Income). Probably not. The Social Security Administration wants to encourage self-sufficiency and has guidelines that, in many cases, will enable individuals receiving SSI to continue their education without diminishing monthly payments.

SSI is a monthly cash payment made to eligible individuals with disabilities and, in many cases, it’s fundamental to their financial security. It’s a means-tested benefit, and until a child reaches the age of 18, parental income and assets are evaluated when determining qualification. Since an individual may not have more than $2,000 in “countable assets,” most minors are ineligible. However, once they reach 18, family assets are no longer considered, and many individuals with disabilities begin receiving SSI at that point. At the same time, many of them continue with high school education until the age of 21. Upon graduation, they may attend vocational training or college. While doing so, they may work a part-time job or receive financial aid, including room and board.

Protected Savings

Special needs trusts (SNTs), ABLE accounts and Social Security’s PASS (Plan to Achieve Self-Support) are several ways to set aside money for education, among other things. While these savings tools are regulated differently from one another, they enable funds for eligible individuals with disabilities to be accumulated without affecting means-tested government programs.

Monthly Earnings

Student Earned Income Exclusions (SEIE) take summer or part-time jobs into account by disregarding more income for students than for non-students. To be eligible, individuals must be under 22 and “regularly attending school,” which generally means going to classes for at least one month during the quarter to which SEIE applies for at least:

  • 12 hours weekly for high school students;
  • 12 hours weekly for vocational training;
  • eight hours weekly for college students

There are exceptions for illness, and different rules apply to home schooling and “homebound” students.

It’s useful to compare SSI guidelines for students with those applied to others:

  • Non-Students: SSI doesn’t count the first $65 of monthly earnings and half of the remainder, along with a $20 general income exclusion. What’s left reduces SSI dollar-for-dollar.
  • Students: SSI disregards the first $1,790 of monthly earnings, up to an annual total of $7,200. Earnings over $1,790 per month will then receive the same earned income exclusion and general income exclusion available for non-students, after which earnings reduce SSI dollar-for-dollar.

Financial Aid

Any financial assistance covered by Title IV of the Higher Education Act of 1965 or Bureau of Indian Affairs programs isn’t counted as income, regardless of use. Interest and dividends from unspent funds are also exempt. Pell Grants, Federal Work-Study and Direct Loans are just a few of the covered programs.

But it does matter when and how financial aid and gifts from other sources are spent:

  • There’s no effect on SSI so long as funds are spent on education-related needs within nine months of receipt.
  • Funds set aside for education purposes but ultimately used differently are counted as income at the earlier of two points: in the month they’re spent or the month the individual no longer intends to use the funds for educational purposes
  • Funds that are neither set aside for education nor immediately spent for that purpose are counted as income during the month of receipt and counted as a resource the next month.

Student Housing

Since SSI is intended to pay for food and shelter, non-students have their payments reduced when they receive such in-kind support and maintenance (ISM) from other sources. In such cases, SSI may be cut back by up to one-third of the maximum federal SSI monthly benefit, plus $20.

But if a student receiving SSI resides on campus, with room and board covered by parents or financial aid, other rules apply. The school living arrangements will be considered temporary and not categorized as ISM if:

  • the individual is over 18;
  • will return to their permanent address during holidays, vacations or following graduation;
  • and lived at their permanent address for at least one calendar month prior to attending school.

On the other hand, if the student receives free housing and meals at their permanent residence, ISM applies and SSI will be reduced.

The Social Security Administration recognizes that education can be a gateway to independence for individuals with disabilities. Paying attention to these guidelines can ensure that students aren’t financially penalized for their ambitions.

Mary L. Waltari is a member of the Special Needs Alliance, a national nonprofit dedicated to assisting individuals with disabilities, their families and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

What Chapters of The Arc Need to Know About Managed Care

By Doug Golub, MediSked President and Co-founder

As an increasing number of states transition individuals with intellectual and developmental disabilities (I/DD) to managed care, provider agencies are faced with additional complexities to work with Managed Care Organizations (MCOs), including new billing systems, requirements and expectations.

Provider agencies must also ensure that the process of moving to managed care for long term services and supports (LTSS) is based on the principles of self-determination, person-centered planning, and individualized supports. Under the new structure, there are strategies to be utilized to ensure that the benefits available can be translated into a service offering that reflect each individual’s desired outcomes, goals, and lives.

Understanding Managed Care
Managed care is a model of health care delivery that in theory is meant to lower costs and offer budget predictability for states, improve care coordination with providers, and increase quality and outcomes for individuals. Managed care plans are a type of health insurance plan, in which states contract with MCOs and pay a capitated (fixed) payment on a per member per month basis. Capitated Payments can be made on a full or partial basis. “Full capitation” is managed care for all service types (health, welfare, and safety supports) whereas partial capitation may only cover a portion of the Medicaid services offered to individuals.

Under this model, MCOs assume responsibility and accountability for providing coverage of services and improving outcomes for individuals served. Managed care is the predominant delivery system for Medicaid health care services. A large portion of people with I/DD rely on Medicaid to live their lives in the community. Some states have made the move to begin including long term services and supports in the managed care system, which they are referred to as Managed Long Term Services and Supports (MLTSS). Several states are using MLTSS to expand home and community based services using different models. Managed care for LTSS is likely to continue to grow.

As of June 2017, more than half of all Medicaid beneficiaries (waiver and non-waiver) receive their health care from MCOs. As illustrated in Figure 1,19 states currently operate MLTSS programs, with three additional states operating MLTSS within a Financial Alignment Initiative demonstration.[1] Only nine states (Arizona, Iowa, Kansas, Michigan, New York, North Carolina, Tennessee, Texas, and Wisconsin) have I/DD populations enrolled in managed care as they are typically the last group to be integrated into MCOs.[2]


Figures 1 & 2. [MLTSS Programs[3], MLTSS Program with I/DD Populations Enrolled, – 2017]

MLTSS Programs-April 2017MLTSS Programs-IDD Pop


How this Affects Chapters of The Arc

As more states transition to managed care, provider agencies must be aware of how this change will impact them, and be a part of the implementation process at every level from selecting the MCOs to drafting the contracts. Providers must work to:

  • Be engaged in the process as states move to enroll individuals with intellectual and developmental disability (I/DD) into MCOs
  • Prevent the disruption of care
  • Examine the benefits available and translate them to service offerings that reflect what individuals they support want and need
Interoperability 101
Interoperability refers to the ability of systems and devices to exchange data. This allows a fuller picture of a person’s health history to improve outcomes, increase transparency and efficiency, and empower individuals.Interoperability

Providers are responsible for providing a unique set of services and supports to individuals that must be integrated into the 360-degree view of the individual. A large part of the managed care delivery system requires interoperability throughout the network – agencies must have access to information technology, billing, and systems operations to make the transition to MLTSS.[4]

This required move to electronic health records (EHRs) will allow for more frequent and timely communication between the individual’s network with the ability to share information about demographics, enrollments, authorizations, claims, and assessments. The top priority, however, must be to increase quality of care – and ensure there is no reduction in the quality of supports for the individuals.

Providers will be essential for reporting on health and wellness of the individual and providing quality data reporting by analyzing patterns of service utilization, integrating Quality Assurance measures and functions, and generating quality management reports.

Supporting the Transition
MediSked’s dedicated team of subject matter experts have experience transitioning providers into a managed care model to ensure organizations meet the expectations and have the ability to be technologically sound and compliant. Over 29% of MediSked clients currently bill to MCOs across nine states and the District of Columbia. MediSked is working to provide care coordination and business intelligence tools to MCOs across the country, including Partners Health Plan, the nation’s first Fully Integrated Duals Advantage (FIDA) designed explicitly for individuals with I/DD and those that support them.

The Arc of the U.S. and MediSked are committed to making the changes to managed care as seamless as they can be. MediSked is a sponsor of The Arc’s national programs.


“The Arc of North Carolina has been in a managed care system since 2012. A managed care system is all about the numbers – MediSked solutions provide the ability to capture, quantify, and measure data of what is happening and when it’s happening. Technology is essential to gather the empirical data to track what is going on. If you can measure it, you can change it.”

– John Nash, Executive Director of The Arc of North Carolina

 


[1] National Association of States United for Aging and Disabilities, Center for Health Care Strategies. (2017). Demonstrating the Value of Medicaid MLTSS Programs. Retrieved from: https://www.chcs.org/resource/demonstrating-value-medicaid-managed-long-term-services-supports-programs/

[2] Ibid.

[3] National Association of States United for Aging and Disabilities. (2017). June 2017 MLTSS Map. Retrieved from: http://nasuad.org/initiatives/managed-long-term-services-and-supports/mltss-map

[4] Centers for Medicare & Medicaid Services. (2013). Guidance to States Using 1115 Demonstrations or 1915(b) Waivers for Managed Long Term Services and Supports Programs. Retrieved from: https://www.medicaid.gov/medicaid-chip-program-information/by-topics/delivery-systems/downloads/1115-and-1915b-mltss-guidance.pdf

Updated CBO Score of Senate Health Care Bill Confirms the Worst for Individuals with Disabilities

Washington, DC – The Arc released the following statement in response to the Congressional Budget Office’s updated report on the Senate Health Care Legislation:

“The Congressional Budget Office’s (CBO) initial score of the Senate Republican’s health care plan confirms that this legislation will have a dire impact on people with intellectual and developmental disabilities. This bill cuts $772 billion from Medicaid. But the real price we will pay is the health of millions of Americans who rely on Medicaid to live and work in their communities. The second score showed how much deeper the cuts will be long-term. CBO found that compared to current law Medicaid would decrease by 35% in 2036.

“The numbers highlight what we already knew – this bill is dangerous and insufficient to keep people with disabilities insured or support anyone with complex medical needs. Any Senator supporting this travesty of a bill will be accountable for the negative impact on their constituents and the irrevocable damage it will do to our community based services system. As the initial CBO score showed, a vote in favor of this bill is a vote in favor of cutting health care coverage from at least 22 million individuals by 2026. Per the report, by next year, 15 million more people would be uninsured compared with current law.

“This bill unravels decades of bipartisan work and sets back the progress of the disability rights movement in our nation, all for the purposes of giving a massive tax cut to health insurance firms, pharmaceutical companies, medical device manufacturers, and other entities. The authors of this legislation show a disturbing disregard for the health, wellbeing, and independence of their constituents with disabilities. The numbers paint a bleak picture –  these cuts could mean the difference between community living and life in an institution or in some cases the difference between life and death. The cuts to Medicaid included in this bill are an assault on people with intellectual and developmental disabilities and we implore Senators to do the right thing and oppose this bill,” said Peter Berns, CEO of The Arc.

Disability in America – Second Article in Series Continues Biased, Flawed Reporting

by T.J. Sutcliffe, Director, Income & Housing Policy

In March, The Washington Post launched a new series, “Disabled, America,” to look at how disability “…is shaping the culture, economy and politics…” of rural communities. The first article in the series met with widespread criticism for multiple errors in its data and facts, and for leaving the public with negative, false impressions about Social Security’s disability programs and rural beneficiaries.

Unfortunately, the second article in the Post’s series only went further down the path of reporting by stereotype and anecdote. The article profiles a family in Pemiscot County, Missouri with several members who have disabilities, including a mother and her adult daughter who receive Social Security disability benefits.

Media Matters summed up the outrage at the article’s portrayal of the family as “…a ‘mean-spirited’ and ‘cartoonish’ illustration of the struggles of those living with poverty in rural America.” In Poynter, S.I. Rosenbaum noted that the article failed to provide even basic facts about Social Security’s disability programs, writing that “…without them, in my opinion, the story is incomplete and even misleading.” The Urban Institute pointed out many of those missing facts.

Notably, the second article failed to provide important context, such as the fact that Missouri has a relatively high statewide rate of residents with disabilities, particularly in many rural Missouri counties. In addition, record numbers of Americans today live in multigenerational households, and disability often runs in families for reasons that include genetics, common exposure to environmental hazards, and similar past and ongoing access to (or lack of) health care.

With President Trump having recently proposed over $72 billion in cuts over 10 years to Social Security and Supplemental Security Income disability benefits, reporting that focuses on anecdote, with little to no context, runs the risk of leading policymakers down a dangerous and harmful path. In letters responding the Post’s first article and second article, over 50 national organizations urged Congress to “…ensure that any discussions about how to strengthen the nation’s Social Security system are informed by facts—not well-debunked myths and offensive stereotypes.”

Here’s a round-up of analyses and responses to the second Post article – and if you missed it, be sure to read our round-up of responses to the first Post article, as well.