Congresswoman Diana Harshbarger, Senator Mike Lee (R-UT) Re-Introduce Immediate Access for the Terminally Ill Act

WASHINGTON, D.C. - Today, Congresswoman Diana Harshbarger and Senator Mike Lee (R-UT) re-introduced the Immediate Access for the Terminally Ill Act, which would remove the burdensome waiting period for terminally ill patients' access to their Social Security Disability Insurance (SSDI) program benefits.

Americans who are unable to work due to a terminal illness qualify for SSDI, providing them with a monthly cash benefit. However, despite past reforms, most patients are required to undergo a five-month waiting period before receiving their benefit - even if they are expected to pass away within that time, resulting in some Americans receiving no benefits at all prior to their passing.

This critical legislation would eliminate this wearisome waiting period, allowing those suffering from terminal illnesses immediate access to their SSDI benefits, and do so in a fiscally responsible manner.

“Vulnerable Americans with grave medical conditions should not be shouldering the burden of Washington bureaucracy when navigating end-of-life decisions,” said Congresswoman Diana Harshbarger. “It is crucial to ensure prompt access to benefits for those enduring significant hardships, and I am proud to join Senator Mike Lee in introducing this vital legislation. Our common-sense bill will guarantee timely benefits for individuals with terminal illnesses, in a fiscally responsible way.” 

“Social Security Disability Insurance provides a financial safety net for disabled workers but requires a five-month waiting period prior to receipt of benefits," said Senator Mike Lee (R-UT) "Unfortunately, for some Americans who suffer from illnesses that are clearly disabling long-term, have short life expectancies, and have no known cure, five months is simply too long. If passed, my bill could put SSDI benefits into patients’ hands sooner, relieving some of the stress associated with end-of life care.”

The legislation has strong support amongst patient advocacy groups, including the National Organization of Social Security Claimants' Representatives (NOSSCR) and Patients Rising.

“We applaud Senator Lee and Representative Harshbarger for their leadership on this important legislation,” said David Camp, interim Chief Executive Officer of the National Organization of Social Security Claimants’ Representatives (NOSSCR). “NOSSCR supports all efforts to eliminate or limit the 5-month exclusion period, but this is especially critical for the most vulnerable Americans who suffer from fatal diseases with no known cure and short life expectancies. Because many Social Security claimants die, lose savings or homes, and suffer as they wait for 5 months for their earned disability benefits.”

"The role of health insurance and our social safety net programs are to shield patients from major financial hardship when serious illness strikes. For patients facing terminal illness, the current five-month waiting period in the Social Security Disability Insurance program is unethical and inhumane,” said Terry Wilcox, Co-Founder and CEO of Patients Rising. “The Immediate Access for the Terminally Ill Act will offer patients and their families important financial support and dignity during a devastating moment."


The Immediate Access for the Terminally Ill Act is a compassionate and fiscally responsible, good-government proposal to ensure that the most vulnerable Americans have quicker access to their earned SSDI benefits. The legislation would help relieve some of the stress and costs associated with end-of-life care, as well as make common-sense reforms to strengthen SSDI program integrity. 

Eligible disabled Americans would be those with a disease listed on the Social Security Compassionate Allowance List, suffer from a disease with no known cure, and have an average life expectancy of five years or less from the date of diagnosis.

The Immediate Access for the Terminally Ill Act would:

  • Give eligible disabled Americans the choice of immediately accessing their monthly SSDI cash benefits in exchange for a 7% reduction; or waiting the current five-month waiting period and receiving their normal full benefits
  • Require any future additions to the Compassionate Allowance Initiative to be recommended by the Social Security Administration and approved by Congress
  • Update the overpayment collection threshold for Old-Age, Survivors, and Disability Insurance (OASDI) from $10 to 10 percent, aligning it with the overpayment threshold in the Supplemental Security Income (SSI) program
  • Eliminate the ability of individuals to access at the same time both SSDI benefits and unemployment benefits

The Social Security Administration currently lists 42 diseases that would qualify under the legislation for immediate access to SSDI.

An analysis by the Social Security Office of the Chief Actuary (OCACT) concludes this legislation would save the Social Security program $5.6 billion over the next decade, and would improve Social Security's long-term actuarial balance.

A summary of the bill can be found here.

Full bill text can be found here.

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