This week I joined fellow members of the Special Needs Alliance in Washington, D.C. to meet with our Senators and Representatives to discuss the Childhood Disability Benefit Fairness Act. The Special Needs Alliance has crafted a legislative solution to a significant problem facing disabled adult children.

The Childhood Disability Benefit Fairness Act addresses the issue where disabled adult children are denied crucial Medicaid and related medical benefits, including mental health care, because they never received SSI before becoming eligible for Social Security’s Childhood Disability Benefit (CDB) (formerly Disabled Adult Child or DAC benefit).

Having a disability can pose challenges when it comes to finding — and maintaining — gainful employment.

People with disabilities have much lower labor force participation than the general population. Many disabled people in the United States want to work and increase their independence but face barriers to entry to the workplace that include a lack of career planning specifically designed for them.

Job training can help young disabled people integrate into the community and support themselves. A half-billion-dollar federal program provides funding to states that is supposed to help students with disabilities enter the workforce when they leave high school. Although these services must be made available to all disabled students, most parents — and even some school personnel — aren’t aware of them.

The program is so unknown it’s been compared to a “secret society.” Here’s your initiation into pre-employment transition services, or pre-ETS, for disabled students.

If you rely on Social Security disability benefits programs such as Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), the year ahead will offer a somewhat minimal amount of relief financially.

The Social Security Administration (SSA) issued its cost-of-living adjustment (COLA) for 2025 on October 10, 2024. This coming year, the COLA will increase by 2.5 percent. The average increase over the past decade, according to the SSA, has hovered around 2.6 percent. The highest adjustment in recent years, an increase of 8.7 percent, went into effect in 2023.

Because of their disability, a person receiving Supplemental Security Income (SSI) may not have worked long enough to qualify for Social Security Disability Insurance (SSDI) benefits on their own work record. Therefore, once they meet the government’s strict physical or mental disability requirements and fall under SSI’s income and asset caps, the SSI recipient might assume that they will never obtain SSDI benefits in the future.

However, this is not always the case. In fact, many SSI recipients who became disabled prior to turning 22 years old may begin to receive SSDI benefits when one of their parents retires, becomes disabled, or passes away.

Currently, individuals who acquired a severe disability prior to age 22 are eligible for Social Security Disability Insurance (SSDI) based on a parent’s work record.

However, if a young person with a disability then wishes to pursue employment opportunities as they transition into adulthood, they may put themselves as risk of losing another benefit, the Disabled Adult Child (DAC) benefit.

In June 2023, Sens. Ron Wyden (D-OR), Bill Cassidy (R-LA), and a group of fellow senators reintroduced a bipartisan bill, known as the Work Without Worry Act.

Designed to allow adults with serious, lifelong disabilities to work without becoming ineligible for certain benefits, the legislation could aid about 6,000 individuals with disabilities over the coming decade if it passes.