How Healthcare is Oppressing with Disabilities

October 30, 2018 | Angelique Long, 2018 AAPD Summer Intern

I’m a walking medical textbook. I have over a dozen diagnoses, with nearly half of them being rare. I have seen hundreds, if not thousands, of doctors in my lifetime and have fought my body to stay alive on more than one occasion. For now, I am able to have a life and function relatively well with the assistance of a fantastic team and an impressive list of pharmaceuticals. I have fought a long, hard battle to get where I am today. But recently, all of that was threatened.

I proudly acknowledge the reason I am alive today is because of the Affordable Care Act (ACA); I was able to stay on my parents’ insurance plan longer and I didn’t have to worry about pre-existing conditions. There is no doubt that the ACA was, and still is, a revolutionary movement in our nation. However, with the lack of support in 18 states, millions of Americans fall in what is now known as the coverage gap. This gap consists of poorer individuals living in those states that have opted to not expand Medicaid and that do not qualify for their state’s existing Medicaid program.2

I have recently found myself among the millions of Americans in the coverage gap, as Missouri, my home state, has not expanded Medicaid. I was aging out of my parents’ plan, and, because of the confusing language of healthcare, I would soon find myself without medical coverage. I went on the marketplace to see what they might have to offer me, like we are so often advised to do, and was told that I didn’t make enough money to enroll in any of their plans. They told me, in the most impersonal way possible, that because I live in a state that hasn’t expanded Medicaid, I couldn’t get a comprehensive health plan. As I have already mentioned, I would not be here today if it weren’t for my insurance. I was terrified – I didn’t have insurance and couldn’t afford to get any.

Despite all of that, I am one of the lucky ones. After resolving some miscommunications, my parents’ insurance provider deemed me completely and permanently disabled. They decided that I am not able to hold gainful employment, and that therefore, they will keep me on. But not without stipulations:

  • I must maintain this disabled status;
  • I cannot make more than $10,000 a year;
  • My address has to remain at my parents’ residence.

Though this is a fantastic temporary fix and I am grateful for it, I don’t want to be stuck in forced poverty my entire life.

Disabled people want to work. Disabled people want to live independently. Disabled people want to live a productive life. But, for some reason, our government sees us as invalid. Things such as not expanding Medicaid put us in a box: either apply for disability or don’t have access to healthcare. Either way, we are limited in our ability to function or lead a gainful life.

I’m a daughter and an aunt. I’m a student and a volunteer. I’m a mentor and an intern. Don’t ever make me just another statistic.


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Angelique Long is a 2018 AAPD Summer Intern. She interned with Families USA.

Action Alert! Tell your Representative to vote NO on a Balanced Budget Amendment (BBA)

April 10, 2018

The House is scheduled to vote on H.J. Res. 2, Proposing a balanced budget amendment to the Constitution of the United States, on Thursday, April 12.

This bill proposes a Balanced Budget Amendment (BBA) to the Constitution of the United States. While it does not directly cut Medicaid, Medicare, Social Security, or other programs, it is all but certain to result in massive cuts.


What is a Balanced Budget Amendment (BBA)?

A BBA would require that the federal government not spend more than it brings in in a given year. In other words, expenditures cannot exceed revenue in a fiscal year.

While this might sound reasonable on the surface, it is actually bad policy. BBA proponents say that the federal government, just like individuals, must have balanced budgets. But this is a false analogy because it would mean that individuals should not be able to borrow for things like home mortgages or student loans. The federal government also needs the flexibility to borrow sometimes to address critical priorities.


Why is a BBA Harmful?


It will result in cuts to Medicaid, Medicare, Social Security, and other large programs.

These programs are a large part of the federal budget and many members of Congress are seeking ways to cut them. Social Security and Medicare are particularly vulnerable because a BBA prohibits spending from exceeding revenues collected in that year. These programs operate with trust funds that collect dedicated payroll taxes that are partially paid out in future years.


It would harm the economy.

A BBA would likely cause significant harm to the economy, making recessions both deeper and longer. In an economic slowdown, revenues (mostly taxes) fall while spending for unemployment and other benefits increases. A BBA would force policymakers to cut federal programs, raise taxes, or both when the economy is weak or already in recession, the exact opposite of what most economists advise.


Take Action

Use the widget below to send an email, tweet, and Facebook post directly to your Representative to tell them to oppose the Balanced Budget Amendment (H.J. Res. 2).

Call your Representative!

Dial the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Representative.

What to say:

  • I am a person/family member/other of a person with a disability.
  • Please vote NO on H.J Res 2.
  • A balanced budget amendment will likely result in severe cuts to programs for people with disabilities.
  • If Congress were truly concerned about deficits, it would not have enacted the Tax Cuts and Jobs Act in December. This law will increase deficits by over $1 trillion over 10 years and mostly helps the wealthiest Americans and large corporations.
  • Congress must not try to balance the budget on the backs of people with disabilities.


Additional Information


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This action alert was developed with content provided by the Consortium for Citizens with Disabilities (CCD).

Action Alert! Urge Congress to Pass the EMPOWER Care Act to Get People with Disabilities & Seniors Back Home

March 6, 2018

Money Follows the Person (MFP) is a Medicaid program that has helped over 75,000 people with disabilities and seniors move out of nursing homes or institutions and back into their communities. MFP restores the dignity and liberty of people with disabilities by promoting and supporting choice and community living.

Funding for the MFP program expired in 2016, and states have already scaled back their plans by approximately 40%. We need your help and advocacy to get the Senate and House of Representatives to pass the bipartisan EMPOWER Care Act (S.2227 and H.R.5306), which would extend and improve the MFP program. Last year was the first time that the number of people that transitioned to the community had declined.

By passing the EMPOWER Care Act and funding the Money Follows the Person program, Congress can help more people with disabilities transition out of institutions and nursing homes and into the homes and communities of their choice. Without action NOW,  more people will be stuck in institutions.


Take Action

Use the widget below to send an email, tweet, and Facebook post directly to your Senators and Representative to tell them to support the EMPOWER Care Act and fund the MFP program.


National Call-In Day for Community Living: #FundMFP
March 7, 2018

Join disability advocates around the country this Wednesday, March 7, for a National Call-In Day for Community Living. Urge your Senators and Representative to co-sponsor the EMPOWER Care Act to extend the Money Follows the Person program immediately.

Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Senators and Representative.

Visit the National Call-In Day for Community Living: #FundMFP web page hosted by the Center for Public Representation for a guide to using the Capitol Switchboard, a call script, and additional talking points. Join the Facebook Event to get the latest updates.


Social Media Day to #FundMFP
March 8, 2018

Join disability advocates around the country this Thursday, March 8, for a Social Media Day to #FundMFP. Urge your Senators and Representative to co-sponsor the EMPOWER Care Act to extend the Money Follows the Person program immediately.




MFP Enhances Opportunities to Live Independently and Age with Dignity

Medicaid requires states to provide care in nursing homes, but makes home- and community-based services (HCBS) optional. MFP better re-balances Medicaid by providing grants to states to cover transitional services for individuals who wish to leave nursing homes or other institutions. Thanks to MFP, over 75,000 individuals with chronic conditions and disabilities and seniors have been able to transition from institutions back into the community since 2015.


MFP Rebalancing Demonstration is a Success Story – Improves Quality of Life

At the end of 2015, more than 43 states and the District of Columbia were participating in the MFP demonstration. As part of an evaluation provided to Congress in a 2017 report, the Centers for Medicare and Medicaid Services (CMS) concluded that there is strong evidence beneficiaries’ quality of life improves when they transition from institutional to community-based long-term services and supports (LTSS). MFP participants experienced increases across all seven quality-of-life domains measured, and the improvements were largely sustained after two years.


States Save with Money Follows the Person

Providing LTSS in the home is more cost effective than institutional care because, among other reasons, it eliminates the need for Medicaid to cover the cost of room and board in a nursing home. On average, per-beneficiary per-month expenditures for those participating in the re-balancing demonstration declined by $1,840 (23 percent) during the first year of transition from a nursing home to home and community-based LTSS, saving $978 million. CMS also found that MFP participants are less likely to be readmitted to institutional care than other beneficiaries who transition but do not participate in the program.

The Time is Now: Money Follows the Person Expired in September 2016

Unfortunately, the MFP program expired over a year ago. States can continue to use their remaining grant funding through 2020, but that is not enough to maintain the program at current levels, and certainly will not allow states to expand the number of participants. Overall, states have had to scale back plans submitted to CMS by approximately 40%. This means fewer individuals will be able to transition out of institutional settings into the care setting of their choice. The EMPOWER Care Act solves that problem by reauthorizing the program through 2022.


The EMPOWER Care Act Makes Improvements to the Program

The EMPOWER Care Act improves the MFP program by reducing the number of days someone must be in a nursing home before becoming eligible to transition from 90 days to 60 days (evidence shows that the longer someone remains in a nursing home, the harder it can be to transition out). The legislation also enhances the reporting and accountability of MFP funding and requires the Department of Health and Human Services to conduct a best practices evaluation that covers the most effective state strategies for transitioning beneficiaries from institutional to qualified community settings and how such strategies may vary for different types of beneficiaries.


Ask your Members of Congress to Co-Sponsor the EMPOWER Care Act Today!


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This action alert was developed with content provided by the Consortium for Citizens with Disabilities (CCD).

Alert updated March 16, 2018.

How to Get Disability Assistance for Chronic Lupus

February 7, 2018 | Andrew Mathis, Mathis & Mathis Disability Advocates

Most people don’t understand what it’s like to have lupus. It’s a debilitating disease with complicated symptoms that can change and worsen over time.

If you — or someone close to you — experiences lupus effects severe enough to make working impossible, there is an avenue for financial relief: Social Security Disability benefits.

Social Security is famous for providing retirement benefits. But in the event that health problems force you out of work before you reach retirement age, Social Security also has disability programs that act as a form of insurance.

These programs provide monthly checks and qualify you for government-run medical insurance through Medicare or Medicaid.

Winning those benefits, however, is hard.

As a professional disability advocate, I see the challenges people face with lupus — and with being denied disability benefits — all the time.

But with a serious condition like lupus, a carefully built application can secure your benefits and help you maintain your financial independence.

In this post, I’ll explain how Social Security approaches lupus as a qualifying disability.


What is Chronic Lupus?

The Lupus Foundation of America defines lupus as a chronic autoimmune disease that can damage any part of your body –– skin, joints, and organs –– affecting 5 million people worldwide, with more than 16,000 new cases reported each year.

“Chronic” means the signs and symptoms last longer than six weeks and often for years.

With the right medical care, the Lupus Foundation says, most people with lupus can lead a full life.

But severe cases of lupus can become a disability. Lupus can even be fatal.

Common symptoms, according to the Lupus Foundation, include:

  • Extreme fatigue
  • Headaches
  • Painful or swollen joints
  • Fever
  • Anemia
  • Swelling
  • Pain in chest on deep breathing (pleurisy)
  • Sensitivity to sun or light
  • Hair loss
  • Abnormal blood clotting


How Lupus Qualifies for Social Security Disability

Social Security maintains a list of official qualifying diseases, called its “Blue Book,” and lupus is included on the list.

For Social Security’s purposes, lupus qualifies as a disability when it meets these conditions:

  • It involves two or more organs or body systems.
  • It includes at least two major signs or symptoms, such as severe fatigue, fever, malaise, and involuntary weight loss.


If lupus symptoms occur repeatedly, the disease qualifies as a disability when it causes these limitations:

  • Limitation of daily living activities
  • Limitation of social functioning
  • Limitation in completing tasks in a timely manner because of problems with concentration, persistence, or pace


Social Security also has rules that apply to every kind of disability:

  • You must be unable to continue in past work.
  • You must be unable to adjust to other work.
  • Your condition must be expected to last at least a year.


Why is it Hard to Win Social Security Disability Benefits?

The Social Security Administration is grappling with years of cuts to the resources it needs to run its programs. It also faces political pressure to avoid granting benefits to anyone who doesn’t deserve them.

So applying for disability benefits is complicated and confusing, filled with long forms and thousands of rules, regulations, and procedures.

In recent years, Social Security and other observers — including me — have reported that most people get denied when they first apply. As many as two-thirds of initial applications for disability benefits get turned down.

When you’re denied, your next step is to appeal. A key step in appealing is going to a hearing with a Social Security administrative law judge. But, as many news reports have shown, Social Security has a backlog of more than 1 million people waiting for hearings. The wait can last more than a year.

A condition like lupus comes with particular challenges in convincing your claims examiner that your health problems are severe enough to warrant benefits.

Lupus has a wide variety of symptoms. Many of them— like fatigue — are difficult for someone else to observe. The symptoms change over time.

But if you have lupus and Social Security denies your application for benefits, you should appeal. Appeals are often when people succeed at winning benefits.

You can get help with your appeal from a professional Social Security Disability advocate. This is what we do at my firm in the Washington, D.C. area.

Most professional advocates will provide a free initial consultation on your case. And most only charge a fee when you win benefits.

Experienced advocates deals with the Social Security system every day. They know how to build your appeal to give you the best chance of winning benefits, including gathering all-important medical evidence.


What Medical Evidence Do You Need?

Social Security calls medical evidence the “cornerstone” for proving a disability application.

The most important evidence you can provide comes from medical professionals who treated you for your impairment.

Hold on to all of your medical records from treatment for lupus. You’ll need these records for your application or appeal. A professional advocate can also help you gather all the evidence you need.

Social Security looks for evidence of these main points:

  • Existence of impairment, including the “objective medical evidence” that you have an impairment
  • Severity of impairment, establishing how your impairment affects your ability to work
  • Non-medical sources, including statements from coworkers, family members, and others who know you


What Forms Do I Need?

Applying or appealing for Social Security Disability benefits means filling out a lot of forms.

Here are a few key ones:

  • The Disability Report,  Adult, FORM SSA-3368-BK
  • The Work History Report, FORM SSA-3359-BK
  • The Recent Medical Treatment Report, FORM HA-4631
  • The Medications Report, FORM HA-4632
  • The Hearing Request, FORM HA-4632


My firm’s website includes descriptions of these and other forms you might encounter in the process of applying for disability benefits.


Do I Have a Disability Case for Lupus?

If your lupus is keeping you from working, you may qualify for Social Security Disability benefits.

Don’t be afraid to apply — or appeal if you’re denied. And don’t hesitate to reach out and get help. Too much is at stake.

When health problems have changed everything, those monthly checks can help you move forward with your life.


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Andrew Mathis is an Accredited Disability Representative (A.D.R.) serving the Washington, D.C. area. He leads Mathis & Mathis Disability Advocates and has spent more than 25 years helping people secure the disability benefits they need.


Action Alert! We Must Continue the Fight to Protect Medicaid

January 25, 2018

The House and Senate Republicans and Democrats are meeting at the end of the month to determine their respective caucus’ legislative priorities for 2018.  The disability community must remind Congress that we support the Medicaid program and that they should not take steps to cut or cap the program.



Key House and Senate leaders have indicated that they would like to cut spending on federal programs such as Medicaid in response to the 1.5 trillion dollar loss of revenue due to the tax cuts. Some leaders have been careful to say that Medicare and Social Security are off the table for possible cuts but Medicaid, food assistance, Supplemental Security Income and others remain targets.  This is a continuation of the fight in 2017 except they are using different messaging.  Medicaid is at risk whether they are calling it “welfare reform” or “opportunities” or “jobs for people”, the end result is reducing enrollment in Medicaid and spending less on the program.

The only feasible way for Congress to enact major cuts or caps to Medicaid this year is through special budget rules (known as reconciliation) that allow the Senate to pass budget-related legislation with a simple majority. But reconciliation cannot proceed without first passing a budget resolution that includes instructions that would allow the Senate to use special budget rules.  We must remind Congress that we want to protect Medicaid and other programs. Insist that Congress refuse to include reconciliation instructions in any budget legislation and instead seek bipartisan efforts to strengthen Medicaid and other social programs people with disabilities rely on.


Take Action

Call your Representative and Senators today — 202-224-3121.  EVERY call matters.  If we can prevent Congress from passing a budget, then Congress will not be able to cut or cap Medicaid. Act now as Congress will be deciding what direction to take at the end of the month.

What to Say:

  • I am your constituent.
  • I am a person with a disability (or a family member, or professional in the field).
  • Medicaid provides critical services to people with disabilities.
  • Protect Medicaid from cuts and caps.
  • Do not pass a budget that allows Medicaid cuts.


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This action alert was developed by the Consortium of Citizens with Disabilities (CCD).

Action Alert! Tell Congress to Fund CHIP and Protect Children’s Health

December 21, 2017

The Children’s Health Insurance Program (CHIP) provides low-cost health insurance to children in families that do not qualify for Medicaid, but still need assistance to access health care. Nearly 9 million children, including many children with disabilities, depend on CHIP for health coverage.

Unfortunately, Congress’s failure to reauthorize CHIP puts the health and well-being of these children at risk. Federal funding for CHIP expired on September 30, 2017, and as a result, many states are beginning to run out of funds to support the program. Sixteen states expect to exhaust all of their CHIP funding before the end of January 2018, with another 21 states running out of funds by March 2018 (Kaiser Family Foundation).

CHIP was a bipartisan initiative when it was first passed in 1997 and has received bipartisan support since then. It is a program that supports children in all states and has helped lower the uninsured rate of children to 5% since the program began.

Time is of the essence – Congress must act now to fund CHIP!


Take Action

Call your Members of Congress

Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Senators or Representative.


Email your Members of Congress

Contacting Congress provides unique links to email your Senators and Representative directly.


Tweet your Members of Congress

Twitter has become a powerful tool to communicate with elected officials directly. Find your Senators and Representative on Twitter and tell them to protect children’s healthcare by funding CHIP!



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