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.

State Successes  

Organ Transplant legislation passed in:

Maryland – May 12, 2015

Massachusetts – December 2, 2016

Oregon – June 20, 2017

Delaware – September 12, 2017

Kansas – February 22, 2018

Ohio – September 28, 2018

Pennsylvania – October 23, 2018

Washington – May 8, 2019

Louisiana – May 30, 2019

Indiana – April 3, 2019

Virginia – March 10, 2020

Iowa – June 25, 2020

Missouri – July 14, 2021

Florida – July 1, 2020

Arkansas – April 26, 2021

Oklahoma – April 20, 2021

Wyoming – March 30, 2021

Nevada  – May 31, 2021

Minnesota – May 25, 2021

Tennessee – May 18, 2021

Texas – May 18, 2021

Montana – May 12, 2021

Colorado – May 6, 2021

Georgia – July 1, 2021

Down Syndrome Information Laws:

Virginia – January 18, 2002

Missouri – August 28, 2007

Massachusetts – June 22, 2012

Louisiana – 2014

Maryland – May 5, 2014

Texas – July 18, 2014

Tennessee – July 18, 2014

Pennsylvania – July 18, 2014

Delaware – May 7, 2014

Indiana – 2015

Maine – 2015

Kentucky – June 24, 2015

Minnesota – August 1, 2015

Ohio – March 23, 2015

Illinois January 1, 2016

New Jersey – January 11, 2016

Washington – March 29, 2016

Nebraska – April 07, 2016

Florida – 2018

Mississippi – March 18, 2021

Subminimum wage legislation in:

Maryland – May 19, 2016

New Hampshire – May 7, 2015

Alaska – February 16, 2018

Reno, NV – January 9, 2019

Texas phased out subminimum wage in some capacity on May 14, 2019

Oregon – June 21, 2019

Maine – December 20, 2019

Washington – April 16, 2021