Federal Successes (2017- Present)

  • Congressional directive to NIH to establish the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndrome project, launched in 2018.
  • ABLE to Work Act, enacted into law in 2018, 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 $12,140); or the individual’s compensation for the taxable year.
  • ABLE Financial Planning Act, enacted into law in 2018, 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, enacted in 2018, will expand research on treatments for congenital heart defects and encourage lifelong, specialized care for patients.
  • Kevin and Avonte’s Law, enacted into law in 2018, to enhance the safety of individuals with DS who wander.
  • Congressional directive to the National Council on Disability to serve as an interagency coordinator on ABLE Act implementation launched in 2018.
  • In 2019, the ACE Kids Act 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.
  • In 2020, the Older Americans Act Reauthorization 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.

State Success (2017- Present)

 ABLE Programs launched in the following states:

  • Delaware
  • New Mexico
  • West Virginia
  • Arizona
  • Wyoming
  • Texas
  • Oklahoma
  • New Jersey
  • Washington
  • Arkansas
  • Mississippi

 

Sub-minimum wage legislation in:

  • Seattle, WA
  • Alaska
  • Reno, NV
  • Texas
  • Oregon
  • Kings County, WA
  • Maine

Organ Transplant legislation: