What Could Happen to Social Security?

On August 22, the Associated Press published an article about the increasing need for Social Security disability benefits, in light of the continued economic downturn, the related pressures it places on the Social Security Administration, and Social Security’s projected long-term solvency. 

Social Security is far more than a retirement program--more than one-third of all monthly Social Security checks go to people who are not retired. At least 11 million people with disabilities, their spouses and children receive Social Security benefits and this includes some people living with multiple sclerosis (MS). If you live with MS and are unable to work due to an MS-related disability and/or other conditions, you might be entitled to Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits. 

Multiple sclerosis can be an extremely expensive disease to manage, with most people with MS being prescribed one of the “disease modifying therapies” and four to six other medications to ease symptoms and help maintain a high quality of life. Combined, drugs to help manage multiple sclerosis can exceed $30,000 per year or more than $800 per month out of pocket. The Social Security benefits people living with MS and other disabilities receive helps keep them out of poverty. More than one-half of disability insurance beneficiaries rely on Social Security for at least 75 percent of their income. 

In the 25-month period ending in October 2010, the number of claims pending a disability medical decision rose from 556,670 to 851,812, an increase of 53 percent. Despite these unprecedented challenges, the Social Security Administration (SSA) continues to utilize its resources to clear more hearing cases. Processing time for a hearing has been reduced from 491 days for all of FY 2009 to 377 days in the month of October 2010. SSA is on track to meet its commitment to eliminate the backlog, but needs continued resources to do so. 

The National MS Society has supported annual appropriations for the SSA to continue driving down disability backlogs, improve services to people with disabilities, increase efficiency, and keep pace with the rising demands of the American public. As the newly-formed Congressional “supercommittee” considers ways to significantly reduce the nation’s long-term deficit, changes to Social Security are possible. The Society will continue collaborating with other disability organizations to help ensure that any changes to this program do not happen to the detriment of persons living with disabilities. To learn more about the importance of Social Security and possible changes, click here.

Q & A on Essential Health Benefit

Confused about healthcare reform?  You’re not alone – it’s complicated! To shore up your understanding of some basic concepts or provisions in the Affordable Care Act (ACA), we’ll include a single question and answer each week.  Send your suggestions about which concepts, terms, key dates or other aspects of healthcare reform you’d like a Q and A on in future editions of Federal Fridays via e-mail to Kim.Calder@nmss.org. 

We’ll start this week with a question about the Essential Benefit Package.    

Q:   What is most important to understand about the “essential benefit package”?

A:  To help standardize health insurance policies and coverage, Congress included a list of 10 items and services as the “essential benefit package” in the Affordable Care Act.  This list is only an outline however, and the difficult task of further defining the amount and scope of these essential benefits was left up to the Secretary of HHS to clarify through future regulations.

The law also requires the benefit package to be “like a typical employer-based plan”.   Advocates and other stakeholders have been speculating about how HHS will interpret all of this, and hope to see the proposal (regulation) before the end of 2011. Note that the essential benefits will be required in all individual and small group policies sold as of 2014  as well as new Medicaid coverage. 

10 Essential Health Benefits categories required under the Affordable Care Act:

• Ambulatory patient services
• Emergency services
• Hospitalization
• Maternity and newborn care
• Mental health and substance use disorder services, including behavioral health treatment
• Prescription drugs
• Rehabilitative and habilitative services and devices
• Laboratory services
• Preventive and wellness services and chronic disease management
• Pediatric services, including oral and vision care

Debt Ceiling Deal Reached!

Earlier this week Congress and the Administration brought together a debt ceiling deal that avoided possible U.S. Government Default and implemented a structure by which the debt ceiling will be raised, spending cuts will be enacted, and further automatic cuts will happen should Congress and the Administration not agree on additional savings.

The debt ceiling agreement and subsequent actions in Congress are important to the National MS Society because it is estimated that approximately 40% of people living with MS rely on Medicaid or Medicare or a combination of both for their health care needs. Changes to these programs are therefore quite important and a top priority for the Public Policy Office.

 In addition to agreeing to hold a vote on a Balanced Budget Amendment to the U.S. Constitution, the ‘Budget Control Act’ encompassed the following two key components:

1. Nearly $1 Trillion in cuts over 10 years by enacting discretionary spending caps

• The President gets authority to immediately increase the debt ceiling by $400 billion (to take us through Sept 2011) then another $500 billion happens automatically unless Congress passes a measure of disapproval (which would then be vetoed).

2. Creation of a 12 Member Joint Select Committee on Deficit Reduction in Congress to identify another $1.2 to $1.5 Trillion in cuts by November 23, with votes taken by December 23.

 • Often referred to as a ‘super committee, it must identify and Congress must enact $1.2 trillion in debt reduction by end of year or a trigger kicks in which will sequester that amount through automatic, across the board cuts.  (For a Q & A on the Committee see Kaiser Health)

 • If the committee approves and Congress passes debt reduction less than $1.2 trillion, the automatic spending reductions would make up the difference. For example, if Congress only enacts $800 billion, then $400 billion will happen through across the board cuts.

 • The committee can consider any part of the budget including entitlements (such as Medicaid) and revenues.

 • Cuts to entitlements (to elicit savings) are likely to occur through policy changes, or structural reforms of the program(s). Policy changes could include greater state flexibility and federal waivers (impacting Medicaid possibly).

 • If at least $1.2 trillion in savings is enacted, then the debt ceiling increases again, dollar for dollar, automatically, which will take us through 2012.

The debt bill exempts Social Security, Medicaid, and low income entitlement programs from sequestration, however, if the $1.2 billion in savings is not enacted, then Medicare provider and plan reimbursement can be cut but up to 2% as part of the sequester. The across the board cuts through sequestration would be split, 50% defense and 50% non-defense spending which creates incentive for the super-committee to actually put forward a plan.

The Society is pleased that Medicaid has been spared immediate cuts and has been exempted from potential across the board cuts down the road. We thank champions on Capitol Hill for helping make this happen. Moving forward, the Society will continue to collaborate with organizational partners to educate Capitol Hill about the importance of programs like Medicaid, Medicare, and Social Security to people living with disabilities. Stay tuned for opportunities to weigh in with your members of Congress and help protect these vital programs! If you are not signed up to receive the Society’s federal action alerts, be sure to sign up through this site (www.nationalmssociety.org/MSActivist) TODAY!

[For additional information on the financial burdens facing people living with MS, here is a fact sheet]

21st Anniversary of ADA

On Tuesday, July 26th, members of Congress and about 200 Americans gathered in the Dirksen Senate Building to celebrate the 21st anniversary of passage of the Americans with Disabilities Act (ADA). This wasn’t just a day to savor how far the ADA has brought our country, but to see how much further we have to go in the fight for equality. Health and Human Services Secretary Kathleen Sebelius commemorated the anniversary with words of encouragement for all that has been done since the implementation of the ADA 21 years ago. Secretary Sebelius also spoke on areas she sees for more progress, such as accessible taxis in all of D.C. and more support for caregivers including through the Lifespan Respite Care Program. 

President Obama through a Presidential Proclamation commemorating the anniversary stated: “Equal access, equal opportunity, and the freedom to make of our lives what we will are principles upon which our Nation was founded, and they continue to guide our efforts to perfect our Union. Together, we can ensure our country is not deprived of the full talents and contributions of the approximately 54 million Americans living with disabilities, and we will move forward with the work of providing pathways to opportunity to all of our people.” President Obama put into words what so many Americans felt on that day in July, 21 years ago. He went on, encouraging “Americans across our nation to celebrate the 21st anniversary of this civil rights law and the many contributions of individuals with disabilities.”

At the celebration, Senators Mark Pryor (AR), and Tom Harkin (IA) and House Minority Whip Steny Hoyer (MD-5) addressed the crowd--which was full of persons living with disabilities who know firsthand how the law has positively impacted their lives. These legislators—who were integral to the law’s passage—discussed the importance of this anniversary, with Congressman Hoyer admitting it is the victory of which he is most proud. I met with Senator Harkin last year at the 20th anniversary of the ADA. I cannot believe it has been a year since the celebration at the White House. That was a monumental experience for me, and for all of those who today—because of the ADA and its commitment to ensuring equal rights to all—do not face as many road blocks. Today I may not be in a wheel chair, I may not have any sort of obvious physical problems, but the ADA affects my life every day. In college, I am protected by the ADA. I invoke my rights whenever I have to take a test; because of my disease and its impact on me, I am allotted more time. I am also allowed a note taker to better help me study for exams. The ADA protects me when I have a relapse- my teachers cannot legally persecute me because of my disability. 

On the anniversary of the ADA, I collected a list of what differences were made because of this bill. In one hour, I counted over 30 resources made more accessible because of the ADA. To think of what life would be like today if handicapped accessible bathrooms, wheelchair ramps, automatic doors and hundreds of other installations were not around, is a life I try to not imagine. This country is a leader in declaring equality for all citizens—including those who live with disabilities. In joining the movement, you show your support in fighting for equality for all.



Senator Harkin looked back on the days before ADA and the differences the bill has made.

Congressman Hoyer spoke on the importance of the ADA and the road ahead for those with disabilities.



Surveillance Act Introduced

On Wednesday, July 20, 2011, the National Neurological Diseases Surveillance System Act (H.R. 2595) was introduced. Last Congress, it was introduced and known as the MS and Parkinson’s Disease Registries bill, but the legislation was broadened before it was passed by the House of Representatives to include all neurological diseases. If enacted, this legislation will bring us yet another step closer to a world free of MS. This bill would create a centralized data collection system at the Centers for Disease Control and Prevention (CDC) that will track and collect data about neurological diseases, including MS. 

Currently, no accurate estimates are available to help us better understand the complexities and intricacies of the MS population.
 
As a person living with MS, I was shocked to learn that the last national study of incidence and prevalence of MS was conducted 36 years ago - in 1975! Can you imagine trying to formulate an accurate hypothesis and conduct scientific studies with data almost four decades old? H.R. 2595 would fix this problem by aggregating all existing de-identified information in one central location for neurological diseases, and thus it will eliminate road blocks for researchers due to the lack of knowledge that inhibits their work.
Over the past forty years, technology like the MRI and other innovative tools have developed that allow doctors to diagnose MS better than ever before. With these advancements has come an increase in detection of MS yet we still don’t know answers to fairly simple questions like— how many people are currently living with MS in the US? Where do people with MS live? What ratio of people living with MS are women versus men? By structuring a centralized system to track important data, H.R. 2595 would enlighten researchers by answering these fundamental questions, helping them solve the puzzle of MS and discover better treatments and one day, a cure. With this increased knowledge both private and public research entities, like the National MS Society, the National Institutes of Health (NIH), and the Congressionally Directed Medical Research Program (CDMRP) can more precisely focus research efforts and ensure that limited research dollars are being maximized.

Channing Barker is the author of this blog post and is an intern in the Society's Public Policy Office in Washington, D.C. this summer. She was diagnosed with relapsing-remitting MS at 16 in 2006. Channing will finish up her last year at the University of Arkansas with a double major in political science and journalism. Be sure to follow our blog and learn all of the exciting opportunities Channing participates in this summer!