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Researching financial planning options for families with intellectual and developmental disabilities

Since 2014, the Achieving a Better Life Experience (ABLE) Act has allowed states to create tax-advantaged savings programs for eligible individuals with disabilities. While many families with children with intellectual and developmental disabilities (IDD) disproportionately live in financial hardship and poverty, the ABLE Act, which has the potential to address financial distress and improve life outcomes has been under-utilized.

Rumi Agarwal, a Ph.D. candidate in the School of Public Health at the Robert Stempel College of Public Health & Social Work, was recently awarded a grant from the Social Security Administration’s Analyzing Relationships between Disability, Rehabilitation and Work (ARDRAW) Small Grant Program to examine financial planning experiences among these families, especially in respect to the ABLE Act.

“This research is crucial as parents of children with IDD face significant challenges such as financial hardship, stress, and anxiety which can impede life outcomes for both parents and children,” Agarwal said. “By examining the financial planning experiences of these families, we may be able to inform change in policies and programs to facilitate financial planning among this parent population and address barriers which hinder participation.”

Agarwal received a one-year, $10,000 stipend as part of the grant and will work with her mentor, Shanna Burke, assistant professor in the School of Social Work, on a nationwide online survey that will be distributed to families through FIU Embrace, local and national organizations serving parents and individuals with disabilities, and through snowball sampling. The study, which is the first of its kind to look at the impact of financial planning and the ABLE Act on families and individuals with IDD, expects to have more than 350 responses by Spring 2021.

The survey will look to understand the kind of financial planning options families are aware of, as well as where families obtain information regarding financial planning options, such as the ABLE Act. The study will also look at the barriers or uncertainties that families foresee or have experienced in efforts to establish financial stability, and the effects, if any, that the ABLE Act or other financial planning options have on employment, education, and independent living among children with IDD. Additional questions will be asked about the impact of financial planning awareness, experiences, and barriers on the mental health of parents of children with IDD.

“I think that current rates of banking and the utilization of ABLE accounts are low among this population as many parents are either misinformed, not aware of the options available, fear that their child could stop receiving government benefits if they exceed a certain monetary balance in the bank account, or do not have sufficient money to deposit into an account,” Agarwal said. “Moreover, many families may not have the financial literacy or support to open and manage these accounts. We need to identify the barriers which are preventing families from financial planning activities.”

The goal of the research is to inform policy change, increase awareness of financial planning services and its benefits, and promote financial literacy and support among this parent population.

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