Updates on Appropriations

The House Appropriations Committee will mark up the ’16 Labor-HHS-E spending bill that was passed by the subcommittee last week. The bill includes $153 billion in discretionary funding, which is a $3.7 billion reduction from 2015 enacted levels and $14.6 billion below the President’s budget request. The bill does not include line-by-line details, so we may not know specific funding for Fragile X until after the full committee markup. Based upon what has been published:

  • National Institutes of Health (NIH) – The bill provides a total $31.2 billion for the NIH, $1.1 billion above the fiscal year 2015 enacted level and $100 million above the President’s budget request.
  • Centers for Disease Control and Prevention (CDC) – The legislation includes a total of $7 billion for the CDC – $140 million above the fiscal year 2015 enacted level and equal to the budget request.

As we learn more about specific funding and directive language for Fragile X we’ll provide updates.

Transition to Independence Act (S. 1604)

Senators Grassley, Wyden and Casey introduced the Transition to Independence Act (S.1604). This bill would create a demonstration project to encourage states to improve employment opportunities for individuals with disabilities using increased Medicaid funding as an incentive to states for helping individuals with disabilities achieve the goals of working and living in the community.

NFXF Comments to the US Department of Labor

The National Fragile X Foundation and our Collaboration to Promote Self-Determination (CPSD) partners submitted comments to the Department of Labor in regard to the Notice of Propose Rule Making for State Vocational Rehabilitation Services Program, State Supported Employment Services Program; Limitations of Subminimum Wage and on Title IV of the Workforce Innovation and Opportunity Act.

21st Century Cures Act (HR 6)

We also joined in support of the 21st Century Cures Act (HR 6) which aims to expedite the process from discovery to development of treatments and provide additional funding for the NIH and FDA. The act has over 180 bipartisan cosponsors and the Energy and Commerce committee voted 51-0 to advance the bill.

Guardianship and the Potential of Supported Decision Making with Individuals with Disabilities

TASH, one of our CPSD partners, recently published Guardianship and the Potential of Supported Decision Making with Individuals with Disabilities. The authors found that full guardianship, rather than a less restrictive supported decision making, is the most common recommendation from school and adult services personnel. TASH and American Civil Liberties Union (ACLU) recommend that full guardianship be a last resort, and that future policy focus on strategies to promote supported decision making for persons with disabilities.


Jeffrey CohenJeffrey Cohen
is the NFXF’s director of public policy and government affairs. He has previously served as a member of the NFXF Board of Directors as well as the interim executive director of the NFXF. Jeffrey has two children living with FXS who are successfully transitioning into independent and productive adults. Jeffrey holds degrees in business administration and law.