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Disability Rights Protected Again: The Arc on Senate Not Voting on Graham-Cassidy This Week

Washington, DC – The Arc released the following statement following news that the United States Senate would not hold a vote this week on the Graham-Cassidy-Heller-Johnson proposal. This was the sixth attempt this year by Congress to repeal the Affordable Care Act and cut Medicaid.

“The Graham-Cassidy-Heller-Johnson proposal recycled the same threats to Medicaid we fought back on time and time again this year. It was an unacceptable approach for those who rely on Medicaid for a life in the community. While there won’t be a vote this week, it doesn’t change the fact that the architects of this bill showed a disturbing disregard for the important role Medicaid plays in meeting the needs of their constituents with intellectual and developmental disabilities.

“The victors in this battle are the advocates across the country who made clear that the disability community staunchly opposes legislation that includes per capita caps or block granting of Medicaid. We thank all the advocates who rallied together and would not be ignored when the civil rights of people with disabilities were at stake. We also thank the Members of Congress who joined us in opposing this bill.

“This year, we’ve fought multiple health care proposals that threatened the health and well-being of people with disabilities. While we celebrate this victory, we remain vigilant and ready to oppose future threats to Medicaid put forward by Congress,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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URGENT: Three-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.

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The Arc on Motion to Proceed in Senate: “All Roads From This Vote Are Bad for People With Intellectual and Developmental Disabilities”

Washington, DC – The Arc released the following statement on Senate passage of a motion to proceed that starts debate on health care legislation that will impact Medicaid:

“Today, a majority of Senators ignored the pleas of their constituents and moved ahead with debating disastrous health care proposals that will result in people losing health care coverage and threaten the Medicaid home and community based service system.

“All roads from this vote are bad for people with intellectual and developmental disabilities. One path repeals without replacing 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.

“Another option decimates the Medicaid program, and the home and community based supports and services that people with disabilities rely on to do what many people take for granted, including getting out of bed in the morning, eating, toileting, and simply getting out into the community.

“Now is the time for action – it doesn’t matter if this is the first time someone is calling their Senators, or they’ve called them every day in this fight. 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.

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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.

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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
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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 (IDD) 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 IDD 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 IDD 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 IDD 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 (IDD) 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 IDD 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: https://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

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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.

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The Arc Responds to Delayed Vote on Senate Health Care Bill That Showed Dangerous Disregard for People With Disabilities

Washington, DC – The Arc released the following statement in response to the Senate delaying the vote on the Better Care Reconciliation Act:

“We are pleased that the Senate is delaying its vote on this dangerous piece of legislation, but we remain vigilant in our opposition to this bill. We commend the Members of Congress who stood up for the rights of their constituents with intellectual and developmental disabilities by opposing the Better Care Reconciliation Act over the last few days. This bill showed a dangerous disregard for the wellbeing of people with disabilities and those with complex medical needs.

“I want to warn advocates that this is a delay, not a defeat of this threat. The bill is still an assault on the rights of people with disabilities. 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. 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 budget report, by next year, 15 million more people would be uninsured compared with current law.

“We will continue our efforts to change the hearts and minds of those who supported this bill and help them understand that their constituents rely on Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. Those are the Senators we need to reach; we need them to realize what is at stake. Our work is far from over, we will continue to work tirelessly in opposition to this bill. We encourage members of our network to share their stories with their Senators during the upcoming recess,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc Warns That Senate Republican Leadership’s Discussion Draft of Health Care Legislation Shows Callous Disregard for People With Disabilities

WASHINGTON, DC – The Arc issued the following statement after the release of the Senate Republicans’ health care legislation today:

“This bill will have a devastating impact on individuals with intellectual and developmental disabilities and their families. Make no mistake – people’s lives and independence are on the line.

“More than 10 million people with disabilities rely on Medicaid to live and work in their communities. This bill severely cuts Medicaid. Home and community based services are optional or waiver services for states and, when facing a loss of billions in federal funding, they are what is likely to be cut first. The Arc is outraged that the Senate would undo decades of bipartisan progress building our community based services system with no discussion of the impact on the individuals and families affected by the changes, all for the purposes of giving a massive tax cut to health insurance firms, pharmaceutical companies, medical device manufacturers, and other entities.

“People with disabilities across the country are terrified of what this bill will do to their lives. Medicaid provides access to quality health care and services and supports which help them with the basics of life, such as bathing, dressing, eating, taking medications, managing their finances, transportation and more. It allows family members to stay employed, knowing that their loved one with disabilities is supported to live independently. For many it may mean the difference between life and death. This legislation is an assault on people with intellectual and developmental disabilities and we implore Senators to do the right thing and oppose this bill. A vote in favor of this bill is a vote against the progress of the disability rights movement and constituents who rely on Medicaid for their independence,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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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.