Employment + Financial Planning: A Critical Equation
October 03, 2023
Employment is one of the most significant structural challenges individuals with autism and those who love them face. According to the 2015 National Autism Indicators Report, issued by Drexel University’s A.J. Drexel Autism Institute, 58% of young people with autism have never worked during their early 20s. In contrast, over 90% of young adults with emotional disturbance, speech impairment, or learning disability worked during their early 20s, and 74% of those with intellectual disability.
Even for those people with autism who have a job, employment can threaten their financial security. Individuals who get Supplemental Security Income (SSI) lose half their wages after earning the first $65 monthly. Some states will also stop Medicaid if an individual loses SSI. Most states will also stop Medicaid if an individual has $2,000 in countable assets.
In addition to the apparent lack of funds generated, underemployment can reduce friendships, a sense of independence, and opportunities to develop the “soft skills” needed to live an interactive life.
Two repeatable and sustainable solutions are Spectrum Works and Hire Autism. Spectrum Works starts providing resources to individuals in high school and does not stop when the individual leaves school. Hire Autism, as a digital career and employment resource, has the unlimited potential to connect willing parties nationwide.
Spectrum Works, a New Jersey organization working to change these statistics, notes on its website that “social deficits pose great challenges for people with autism, and often this lack of soft skills creates their greatest obstacles to obtaining and maintaining employment. To maximize success on the job, Spectrum Works dedicates part of its program to teaching and practicing these skills (e.g., communication, conflict resolution, managing stress, problem-solving, etc.) through fun and dynamic hands-on activities in a classroom setting.” They provide onsite services and receive funding through the New Jersey school systems and the New Jersey Division of Developmental Disabilities.
Hire Autism is OAR’s autism-friendly online space to meet prospective employers. Once applicants have created a personal profile, they can browse job postings and apply. They may also upload a resume and cover letter. In addition, Hire Autism has a resource center that offers information and advice on writing resumes, preparing for interviews, navigating the
workplace, and more. Hire Autism gives mutually interested employees and employers a place to meet.
Caregivers, most frequently mothers, face another systemic work issue. It turns out that raising an individual with autism has a price. A study published in PEDIATRICS in 2021, titled Children with Special Healthcare Needs and Foregone Family Employment, puts that price at an annual average of $18,000 per family or $14 billion taken together in the United States.
Structural changes that could mitigate the employment loss include expanding Family Medical Leave, more daycare to help children with special needs, and improved funding for home healthcare services, especially those geared to teaching caregivers successful techniques for assisting children with autism.
Proper financial planning allows families to structure any remaining assets left to a family member with autism so that those assets do not disqualify any needs-based assistance.
One idea to make things easier started around a kitchen table after a Down Syndrome of Northern Virginia Board meeting. Five parents sitting around that kitchen table developed the initial idea. They were instrumental in introducing the first ABLE bill, the Financial Savings Account for Individuals with Disabilities (FSAID) Act. My small contribution involved introducing the parents to former Congressman Bill Brewster [D-OK], who advised that the bill needed a different acronym to get passed by Congress. In 2010, it was renamed to define the legislation’s goals better — The Achieving a Better Life Experience (ABLE) Act. My suggestion was to enhance acceptance of the account; it needed to be a 529 program. Congressman Ander Crenshaw (R-FL), the first ABLE Act champion, introduced the FSAID bill in 2006. In 2023, up to $17,000 may be contributed to an ABLE account annually.
Although an ABLE account is a valuable tool, special needs trusts remain the most effective means for families to leave significant assets that can provide a lifetime of care. There are two main types of trusts, but they are both designed to provide resources to benefit an individual with a disability and to preserve needs-based public benefits. Assets that never belonged to the individual are considered third-party trusts and are not subject to paying back public benefits. First-party trusts, assets that initially belonged to the disabled person, and ABLE accounts in most states are subject to paying Medicaid back for prior benefits.
Christopher Waddell, CFP®, is the father of three sons, two with autism, and managing principal of Waddell Group. Waddell Group is not a registered broker/dealer, nor is it affiliated with Raymond James Financial Services. Investment advisory services are offered through Raymond James Financial Services Advisors, Inc. For more information, contact Christopher.Waddell@RaymondJames.com or 703-881-9173. Learn more online at WaddellGroup.net.
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*Any opinions are those of Christopher Waddell and not necessarily those of Raymond James. The foregoing information has been obtained from sources considered to be reliable, but we do not guarantee that it is accurate or complete, it is not a statement of all available data necessary for making an investment decision, and it does not constitute a recommendation. All opinions are as of this date and are subject to change without notice. Investing involves risk and you may incur a profit or loss regardless of the strategy selected, including asset allocation and diversification. Past performance is not indicative of future results.
**Any opinions expressed in this article are those of the author and are not endorsed in any way by the Organization for Autism Research (OAR).