Bill introduced to help terminally ill access SSDI

WASHINGTON, D.C. — Congresswoman Diana Harshbarger (R-TN-01) and Senator Mike Lee (R-UT) on Jan. 15 re-introduced the Immediate Access for the Terminally Ill Act in the House and Senate respectively, 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 still required to wait five months before receiving benefits — even when their life expectancy is shorter than the waiting period — leaving some Americans without any benefits during their lifetime.

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.

"No one diagnosed with a terminal illness should spend their final months tangled in government red tape," said Congresswoman Harshbarger. "At life's most difficult moments, families deserve compassion, certainty, and peace of mind. This legislation ensures timely access to earned benefits while remaining fiscally responsible, and I'm proud to work with Senator Mike Lee to make it law."

"The current 5-month waiting period for disability benefits keeps terminally ill American workers from actually being able to use them in time," said Senator Mike Lee. "Americans suffering from debilitating, life-threatening conditions need a better solution. The Immediate Access for the Terminally Ill Act will give workers a pathway to bypass the burdensome waiting period and receive the help they need for end-of-life care in a timely manner."

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

"We applaud Representative Harshbarger and Senator Lee for their leadership on this important legislation. 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." — David Camp, Senior Policy Advisor, National Organization of Social Security Claimants' Representatives (NOSSCR).

"For patients facing a terminal illness, time is a luxury they do not have. A five-month wait period for disability benefits is a bureaucratic cruelty. We applaud Congresswoman Diana Harshbarger and Senator Mike Lee for standing up for the most vulnerable with the Immediate Access for the Terminally Ill Act. This compassionate legislation empowers patients with the choice to access their earned benefits immediately, providing essential financial dignity and relief from the costs of end-of-life care when families need it most. We are grateful to Congresswoman Diana Harshbarger and Senator Mike Lee for their unwavering commitment to put patients first." — Terry Wilcox, Co-Founder and CEO, Patients Rising

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

The Social Security Administration currently lists 58 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.