More Flexible ABLE Accounts Among ‘Advocacy Day’ Goals of NFXF

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by Mary Chapman |

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NFXF Advocacy Day | Fragile X News Today | announcment illustration

The ABLE Employment Flexibility Act and better workplace opportunities for people with disabilities are among priorities for this year’s National Fragile X Foundation (NFXF) Advocacy Day, set for March 1.

For more than 20 years, the nonprofit organization has brought advocates together in Washington, D.C., to meet with lawmakers and raise awareness of fragile X syndrome and to lobby for research funding and policies to help patients and their families.

Due to the ongoing pandemic, this year’s Advocacy Day will again be virtual. Online training is set for Feb. 25 and educational resources will be provided. The registration fee is $30 for each participant age 13 and older, and $75 for families of up to four people. For more information, send an email to Dan Whiting, NFXF director of community impact, at [email protected].

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“Families, caregivers, self-advocates, doctors, researchers — you are what moves the needle on Capitol Hill,” the NFXF states on a Fragile X Advocacy webpage. “It is easy to think your voice doesn’t matter, but it does. Voices from home are the loudest! They know you are a voter. Showing up, telling your story, educating them, and showing them practical ways they can help is what makes a difference!”

This year, the organization is focusing on issues such as the ABLE Employment Flexibility Act (HR 4672), which would allow employers to make tax-exempt contributions to an employee’s Achieving Better Life Experience (ABLE) account instead of to a 401(k) retirement plan — including an employer’s match. In turn, this would protect most patients’ means-tested federal benefits, according to the NFXF.

“Not only is this beneficial to those living with disabilities who aren’t able to work full time, but it also gives employers striving to recruit, hire, train, and retain people with disabilities additional flexibility,” the organization stated about this act.

NFXF successfully pushed for creation of ABLE accounts, which are tax-differed savings accounts for disabled adults to help pay for expenses including employment training and support. Such accounts are similar to 529 college savings plans.

The ABLE Employment Flexibility Act, introduced by U.S. Rep. Thomas R. Suozzi (D-NY) in July 2021, has been referred to the House Ways and Means Committee.

Increasing patient employment opportunities is another NFXF advocacy goal. To that end, the organization recently joined the CEO Commission for Disability Employment, which brings advocates together with employers and human resource professionals. The group’s objective is to expand employment opportunities through improved policies and employer awareness.

“Employment is just one part of our advocacy efforts,” the organization states. “But all of our advocacy efforts hinge on your involvement because hearing from those most affected, who live in their congressional districts, is the top way to make things happen in Congress.”

The National Fragile X Foundation supports families living with fragile X through community, research, awareness, and education efforts.