RAISE The Standard, April 2025, v.11 n.5 | | |
Financial Planning
Financial planning for people with disabilities is a challenge because so many vital public benefits (SSI and Medicaid) are “means-tested”—meaning they are linked to lower incomes. How can a person get ahead and save for the future? Special financial tools like ABLE accounts and special needs trusts can be confusing, and mistakes can be costly.
In this issue of RAISE The Standard, we will explore how to help youth with disabilities achieve greater financial literacy.
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We Need to Speak About Financial Accessibility
In this blog post, writer Catherine Sokol sheds light on the importance of understanding the challenges of financial planning for a person with a disability.
“The lack of physical accessibility for people who are disabled is well known, but the lack of financial accessibility is not as well known. Everyone I talk to about this is shocked by the fact that I can’t build up wealth without risking being unable to get the care I need. It’s tough to be fully independent if you can’t even do something as essential as saving money, and awareness of something brings understanding and, ultimately, change…”
- Catherine Sokol
Click here to access the full blog post.
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ABLE Accounts and Special Needs Trusts
There are two powerful tools that can help a person with a disability save for the future without losing benefits like Supplemental Security Income (SSI) and Medicaid.
ABLE Account: ABLE accounts are tax-advantaged savings accounts for individuals with disabilities and their families. They allow people with disabilities to save up to $100,000 for education, housing, transportation, employment training, personal care, financial management, basic living expenses, and even legal expenses.
- One ABLE account per person.
- Contributions can reach $19,000 a year.
- Distributions can only go to the person with a disability or for their benefit.
- Funds can be used for education, housing, transportation, employment training and support, assistive technology, and related services, health, prevention and wellness, financial management and administrative services, legal fees, expenses for ABLE account oversight and monitoring, funeral and burial, and basic living expenses.
- If the individual is working, they may be able to contribute additional funds beyond the standard annual limit.
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Earnings in an ABLE account grow tax-deferred and are tax-free when used for qualified disability expenses.
- ABLE accounts can be directly deposited.
- The ABLE to Work Act allows certain ABLE account owners who work and earn income to save up to $32,580 (continental U.S.) each year.
Access the full site with detailed information on ABLE account rules here:
https://www.ssa.gov/ssi/spotlights/spot-able.html
Learn more about the ABLE to Work Act and its contribution rules: https://www.ablenrc.org/able-to-work-act/
Access a Quick Reference Guide on ABLE accounts here:
https://www.ablenrc.org/wp-content/uploads/2025/02/Quick-Reference-Guide_129811661_qrg-abletaxtimesavingsfeb2025.pdf
Special Needs Trusts (SNT): Allows a person to hold funds for items not covered by SSI or Medicaid. There are three types of SNT, and each functions differently:
- First-party special needs trusts are funded by the person’s own assets or income. The person is also the “beneficiary.” Such funds typically consist of personal injury settlements or inheritance. The person must be under 65 at the time that the trust is established. Funds remaining in the trust at the beneficiary’s death must be used to reimburse Medicaid for services to that individual before they can be distributed to anyone else.
- Third-party SNTs are funded with assets provided by anyone other than the beneficiary, such as parents, other relatives, or friends of the beneficiary. Such a trust can be created and funded during the life of the originator (“inter vivos”) or as part of a last will and testament (“testamentary”). Upon the beneficiary’s death, there is no requirement to use residual funds to reimburse Medicaid for services provided to the individual, and “remainder” beneficiaries may be named to receive those assets.
- A pooled SNT can be a practical alternative for small estates or where it is difficult to identify a trustee. Sub-accounts belonging to many beneficiaries are managed as a single entity, usually by nonprofit corporations that call upon the experience of social workers, money managers, and special needs attorneys. Since many financial institutions do not handle small SNTs or charge fees that are not cost-effective for modest trusts, pooled trusts can give families access to highly skilled trustees. Funds remaining at the beneficiary’s death are typically divided between Medicaid and the nonprofit.
Click here to access a short video about all three types of trust, along with some advice about when to use each.
How do I fund a special needs trust? Click here to learn about options.
The Arc of U.S. has created a video that breaks these tools down for self-advocates. Hear from Betty Williams about how she uses her trust to pay for transportation to and from work, as well as bills related to her apartment. Lauren Beller, another person with a disability, gives advice on choosing a trustee. Click here to access the full video.
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This financial toolkit from the National Disability Institute includes a wide variety of financial education handouts. These easy-to-use handouts include guides on financial decision-making, bank accounts, debit and credit cards, disability benefits, and other topics. Some have fillable worksheets, and a few include flowcharts to help make decisions about accounts and benefits. It also includes quick reference guides on many topics related to disability and finance, with brief explanations and web links.
See the page and select one of more than 10 worksheets and 20 quick guides at: https://www.nationaldisabilityinstitute.org/downloads/#financial-toolkit
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This two-page guide from the ABLE National Resource Center includes simple information about the ABLE account, how to open one, and resources to get started. The friendly design and clear information make it a great guide to distribute!
View the Guide at this link.
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In this issue of RAISE The Standard, we focus on the Midwestern Collaborative, a collaboration between Parent Centers in Iowa, Kansas, Missouri, Montana, Nebraska, North Dakota, South Dakota, and Wyoming:
https://www.pathfinder-nd.org/rsa.php
The Midwestern Collaborative works to explore, create, and celebrate statewide services that focus on the development of self-advocacy, self-discovery, and independence for youth with disabilities. Working closely with professionals from both Vocational Rehabilitation Centers and Centers for Independent Living will bring collaborative and innovative services to guide youth with disabilities and their families to services centering on secondary transition and life after high school.
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The RAISE Youth Advocates for Change (YAFC) have produced podcasts on topics important to them as youth with disabilities to amplify the youth voice and support parent centers as they continue to engage with youth and their families.
Click here for episode 8 on independent living.
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Monday, May 12, and Tuesday, May 13, 2025
St. Charles, Missouri
The Annual Aging with Developmental Disabilities Conference brings aging and developmental disability professionals together to learn about best support models and practices alongside the most current information on aging with a developmental disability.
Through information, education, and networking, participants from across the United States will have a better understanding of medical care, medical changes, and best practices that will help them support people with developmental disabilities in living their best lives as well as provide end-of-life care.
Registration fee is $300; it includes tracks for medical, direct support, and self-advocate audiences: https://www.agingwithdd.org/conference/
| | Collaboration • Empowerment • Capacity-building | | RAISE The Standard enewsletter identifies and shares resources that the Rehabilitation Services Administration Parent Training and Information Centers (RSA-PTI) can use and share with families. | | The RAISE Technical Assistance Center is working to advance the accessibility of its digital resources, including its websites, enewsletters and various digital documents. | | RAISE, the National Resources for Access, Independence, Self-Advocacy and Employment is a user-centered technical assistance center that understands the needs and assets of the RSA-PTIs, coordinates efforts with the Technical Assistance provided by PTI centers and involves RSA-PTIs as key advisors and partners in all product and service development and delivery. | |  | |
The RAISE Center is a project of the SPAN Parent Advocacy Network and is funded by the US Department of Education's Rehabilitation Service Administration. The contents of this resource were developed under a cooperative agreement with the US Department of Education (H235G200007)). However, the contents do not necessarily represent the policy of the Department of Education and should not assume endorsement by the federal government.
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