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Federal Successes
- Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act (Public Law No. 113-295) was signed into law on December 19, 2014.
- The 21st Century Cures Act (Public Law No: 114-255) was signed into law on December 13, 2016. This law modernized the process from the discovery of clues in basic science, to streamlining drug and medical device development, to utilizing the power of digital medicine and social media at the treatment delivery phase.
- Helped to prevent the enactment of 2017 health care reform legislation that would have made draconian cuts to Medicaid and other changes that undermine the health care and supportive services that individuals with Down syndrome need.
- Congressional directive to NIH to establish the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndrome project, launched in June 2018.
- ABLE to Work Act Public Law No: 115-97., was passed in 2017, will allow an ABLE account’s designated beneficiary to contribute an additional amount beyond the current limitation on contributions ($15,000 for 2018), up to the lesser of the Federal poverty line for a one-person household (currently $12,880); or the individual’s compensation for the taxable year.
- ABLE Financial Planning Act (Public Law No: 115-97., passed in 2017, will allow ABLE beneficiaries to roll over regular 529 accounts to 529A (ABLE) accounts up to the annual maximum contribution.
- Congenital Heart Futures Reauthorization Act (Public Law No: 115-342), enacted on December 21, 2018, will expand research on treatments for congenital heart defects and encourage lifelong, specialized care for patients.
- Kevin and Avonte’s Law (Public Law No: 115-141), enacted into law on March 23, 2018, to enhance the safety of individuals with Down syndrome who wander.
- Congressional directive to the National Council on Disability to serve as an interagency coordinator on ABLE Act implementation launched in 2018.
- On April 18, 2019, the Advancing Care for Exceptional (ACE) Kids Act (Public Law No: 116-16) was passed to address obstacles to the coordination of care in state-based Medicaid programs for children with complex medical conditions who may seek care across state lines.
- On September 17, 2020, the United States Commission on Civil Rights (USCCR) released their report on subminimum wage and its impact on people with disabilities
- On March 25, 2020, the Supporting Older Americans Act of 2020 (Public Law No: 116-131) was signed into law and included a provision that would provide care givers and long-term care services to those with Alzheimer’s at any age.
- In 2020, the Charlotte Woodward Organ Transplant Discrimination Prevention Act was introduced into Congress.