Future Financial Planning for People with Disabilities – Part 1

One of the highlights of the recent Stetson 2021 National Conference on Special Needs Planning and Special Needs Trusts was a presentation of the results of a new National Study (Study) titled “Future Financial Planning for People with Disabilities.

Presented by Cory Gilden and Caitlin Bailey, the Study was conducted by the National Leadership Consortium on Developmental Disabilities (NLCDD) at the University of Delaware and is available on its website.

Developmental vs. Personal Injury Disabilities

The Study restricts its analysis to “developmental” disabilities, as opposed to disabilities resulting from personal injuries. Neither the Stetson presenters nor the Study itself offer(ed) any reasons for excluding personal injury disabilities – other than the defining name of the sponsoring association itself.

Please see the CORRECTION at the end of this article.

Personal injury disabilities would have understandably introduced many additional issues. Excluding personal injury disabilities from the Study, therefore, is not a criticism. Rather, this writer’s more general criticism is: 1) the fact the Study never mentions this exclusion; 2) never explains the reasons for the exclusion; 3) and thus fails to consider how the exclusion impacts the scope of the Study including the Study’s recommendations.

Issues and Challenges for Structured Settlements

Despite failing to consider disabilities resulting from personal injuries, the Study nonetheless is strategically important for structured settlement and settlement planning professionals. Not only does the Study provide a valuable analysis of a parallel market, the results and recommendations highlight issues and challenge long-held assumptions within our own markets.

At the most basic level, structured settlement and settlement planning professionals should read the Study and ask: what is working, and what is not working, as far as future financial planning for people with developmental disabilities? And what findings and recommendations from the Study, if any, are relevant to structured settlements and personal injury settlement planning?

This article (Part 1) summarizes some of the key elements of the NLCDD Study. A subsequent article (Part 2) will discuss the findings of the Study this writer views as especially important for structured settlements and personal injury settlement planning.

What is the NLCDD?

The NLCDD website identifies the organization as “a partnership of 18 national developmental disabilities organizations that offers … leadership training [plus] …. a resource-rich website for disability organizations emerging leaders in the disability field, a community of practice aimed at supporting the growth and knowledge of disability leaders and research on best practices and innovations in disability supports and leadership.”

Its goal is “to assure the quality and commitment of the next generation of leaders for government and nonprofit organizations serving people with developmental disabilities.”

Who funded the Study?

The future financial planning study was funded by a grant from the May and Stanley Smith Charitable Trust whose funding priorities include “adults and transitioning youth with disabilities. ..The Trust envisions a society where adults and transitioning youth with intellectual, developmental, or physical disabilities maximize their ability to live independently; secure employment; and engage in an inclusive community.”

Summary of the Project

The purpose of the NLCDD project was to study future financial planning for people with disabilities and develop a framework of best practices and recommendations. Launched in June of 2020, the project consisted of three phases of data collection: 1) interviews; 2) a national survey; and 3) expert workshops.

Defining “Future Financial Planning” and “Disability

For purposes of the project:

Future financial planning” was broadly defined as: “taking steps to make sure you have the money and services you need in the future.” One of the expert recommendations within the Study (discussed in Part 2) is the need to establish a common definition for future financial planning.

“‘Disability’ [was] self-identified and categorized as one of the following: intellectual or cognitive disability, developmental disability, physical disability, autism or ASD, mental illness or psychiatric diagnosis, deaf or hard of hearing, blind or low vision related disability, brain injury, learning disability (e.g., ADHD, dyslexia, etc.), sensory disability, or chronic illness. Participants were also able to select “other” and write in their own disability. The definition of disability and opportunity to self-identify align with definitions and methods of the American Community Survey.”

The Interviews

The interviews were used to help develop a national web-based survey that was distributed in February and March of 2021. Experts representing disabilities, financial, and legal fields, as well as people with disabilities and family members of people with disabilities met in May of 2021 to discuss the current state of future financial planning for people with disabilities and suggest the direction for next steps for the project.

The National Survey

Data collection for the project was completed at the end of May 2021. Of the survey participants, 5252 individuals responded and were analyzed. They consisted of:

  • 2478 (47.2%) family members or guardians
  • 1817 (34.6%) people with disabilities
  • 691 (13.2%) disability professionals
  • 229 (4.4%) other professionals

Findings included: 65% of people with disabilities and family members of people with disabilities had some type of future financial account. This percentage was consistent across income levels but differed according to disability type as well as financial literacy and financial training.

Families with higher annual incomes (above $100,000) were more likely to utilize first party and third party special needs trusts whereas families with lower annual incomes (less than $100,000) were more likely to use pooled trusts, ABLE accounts or saving accounts in their own names.


The survey also focused on barriers to future financial planning experienced by people with disabilities, their families, and professionals with the following reasons being listed by survey participants for not having some type of account:

  • People with disabilities: don’t have enough money; too expensive; fear of losing government benefits; fear that government benefit rules will change; don’t know enough about various types of accounts.
  • Family members: fear of losing government benefits; process takes too much time; don’t believe money will be safe; don’t know enough about various types of accounts; too difficult to set up.

Concerning barriers, the Study offered three additional observations:

  • Many individuals believe people with disabilities cannot understand, manage, and save money.
  • People with disabilities frequently do not receive the help they need to plan and save their money.
  • Laws and regulations ( re SNTs; ABLE; etc.) are too complicated for many people to utilize.


Based upon the participant interviews and survey responses, the Study summarizes the primary challenges in the future financial planning process as follows:

  • The complex nature of future financial planning and lack of training opportunities impede financial planning efforts for people with disabilities and perpetuate their economic exclusion.
  • The multiple issues people with disabilities and their families face deter and confuse even highly educated family members.
  • For future financial planning to work for people with disabilities, the siloed financial, legal, and disability worlds need to be more connected and purpose-driven.

Expert Workshops and Recommendations

Phase 3 of the project consisted of experts in the financial, legal and disability fields (including Jeremy Babener and Joseph DiGangi of the Society of Settlement Planners) who offered recommendations. Some of these recommendations, which the Study organizes into the following categories, will be discussed in Part 2 of this two-part Independent Life series:

  • Education, Training and Certification
  • Communication
  • Advocacy
  • An Organization or Structure for Oversight and Guidance
  • Resources
  • Ongoing Support and Services
  • Research


The Study’s Conclusion “doubles down” on its recommendations. The Study also includes multiple Appendices and References.

CORRECTION (November 19, 2021)

Following publication of this Part 1 article, Cory Gilden, one of the Stetson presenters and Primary Investigators of the Study, thoughtfully informed this writer that people who were disabled as a result of personal injuries in fact were included in the Study’s survey.

However, despite making other distinctions, the survey did not apparently attempt to separately identify or differentiate disabled persons who were personally injured or to determine whether they received compensation from a settlement or judgment.

As a result, survey participants who were disabled as a result of a personal injury (whether or not they received any settlement compensation) and survey participants who were developmentally disabled appear to have been otherwise considered as equals for purposes of this Study of future financial planning.

As structured settlement and settlement planning professionals are aware, however, future financial planning for persons with disabilities who are compensated by settlement or judgement for physical personal injuries differs from future financial planning for other persons with disabilities. As a result, some of the Study’s findings and recommendations appear inapplicable, or less appropriate, for this community of disabled individuals.

Part 2 of this Independent Life series therefore will first summarize how future financial planning differs for persons with disabilities who receive personal injury settlements and then consider how those differences impact various findings the Study applies more generally.

Part 3 will identify specific findings and recommendations from the Study which are nonetheless relevant and raise challenging issues for structured settlement and settlement planning professionals.