The Missing Disability Financial Link?

Can we make Disability Financial Planning Easier? Maybe. Something between an ABLE Account and a roll-your-own Special Needs Trust. This kind of feels “retroactively obvious”. What do you think?

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Welcome to Disability Drumbeat #8

Fellow Disability Change-makers –

Welcome and thank you for investing your precious time here. You can also read this issue online.

If you find this newsletter useful, please share it with someone who it will benefit. I hope you’ll reply, point out my errors, ask questions, make suggestions, or just write me, I want to hear from you.

If you are new here, THANK YOU, please introduce yourself, and you can sign up for more of this (usually weekly on Sundays) at disabiltiyalmanac.com.

My bottom line is:

“Much Better is Possible” for children with disabilities and the disabled adults that they will become…

and I hope you want to help make that change happen. The unsubscribe link should be at the bottom of this letter or you can just reply to this email.

We are all in this together.

Steve

PS – Don’t forget to check out Riffs and Licks after the main article.
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Weekly Coffee #66 – 11 December

We’re getting together for coffee on 11 December.

If you are planning a local get-together or interested in how I host this one – let me know. I started this in August of 2023 at the beginning of our school year. It has been a great way to get to know a lot of people, learn about their concerns, and, sometimes I just get an hour or two to work on my own.

I’m at one of our local coffee shops (usually ADA’s Cafe – yes it is named after that ADA) every Wednesday when my son is in school after I drop him off.

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The Missing Disability Financial Link

I’m working on a disability financial planning course cleverly called “Disability Financial Navigator”… and I was walking through the range of financial tools we have available… if you are eligible, you start with an ABLE account (sign up in 15 minutes!), then you jump to a totally custom roll-your-own-hire-an-attorney “Special Needs Trust” (there are also Pooled Trusts but they have other limitations).

Where is something >>>> in between <<< ???

I have a regular IRA and even a ROTH IRA.

I have a brokerage account.

All of these were easy to set up and fund.

And, formally, they are trust accounts (as I understand it)

They have beneficiaries. They send me a 1099 so I can file my taxes.

Easy.

Why not the same for a Special Needs Trust (but let’s call it something a bit more 2020s and less 1970s)… a Uniform Disability Trust (UDT)?

(Technically, it would be a Uniform Third Party Disability Trust – since I’m making up the name :))

And, while we’re at it, a Uniforn Disability Retirement Trust (UDRT) for cases where someone is saving for their retirement or inherits an IRA from someone?

For most disabled people, a standard investment or retirement account is all they will need.

… at least until a parent dies (where a house or other assets might be involved).

So, what’s stopping this?

Nothing? Maybe?

IRAs exist, standard brokerage/mutual fund accounts exist  – the “special needs trust” magic words can’t be hard to add to the agreements and there is no reason (as a “civilian”) to just create a new flavor of account.

8 million disabled Americans are qualified for ABLE accounts today with that number going up to 14 million in 2026 (when the age of eligibility increases from 26 to 46).

So, there are plenty of people who are absolutely eligible… and probably many more (Here’s the list).

There is no limit on the number of Special Needs Trusts that a beneficiary can have, so this would not impair anyone’s ability to have other trusts or a family trust this would just be a

Special Needs Trust in a Box

(but with a better name!)

Ready to Roll!

Thoughts?

… so, anyone got connections at Schwab, Vanguard, Fidelity, eTrade, …. ?

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Riffs and Licks**

10 Things You Should Know… about ABLE Accounts – ’tis the season to make your contributions (or get started on the right foot for next year. The limit on contributions is $18,000 in 2024, going up to $19,000 in 2025 (savings caps don’t seem to be moving : ( ).

You can also watch my YouTube video about ABLE Accounts :) … or if you want to read an article (my feelings won’t be hurt – too much) – A Primer on ABLE Accounts for Americans With Disabilities

Once you’ve got your ABLE Account, you may want to set up a Special Needs Trust… and this is a good Special Needs Trust overview.

For the Hardcore – S.349 – Special Needs Trust Fairness Act of 2015 

In case you want (or need) to know what the US Government – specifically the Social Security Administration – considers a disability (for eligibility) – Disability Evaluation Under Social Security – this is the adult list, the child list is available from the same page.

An excellent comparison of the different types of Disability Financial tools (ABLE accounts, Special Needs Trusts (both first and third party), and Pooled Trusts). Very specific, very good.

Social Security Benefits and Supplemental Security Income (SSI) Payments for Children – SSI is one of the main US Government Disability Benefits Programs (end of 2024… who knows in 2025). My big problem is that Disability Services are handled as a benefits program, like Welfare, instead of an Insurance program (like Medicare).

… enough about money, let’s talk education. This paper analyses different teacher perspectives on Special Education through the lens of changing from an Alternative Assessment to the standard assessment. If you are a parent of a disabled child, you’ll have heard a lot of this!

Using Systems Change Efforts to Implement and Sustain Inclusive Education Practices in General Education Settings for Students with the Most Significant Cognitive Disabilities: A Review of the Literature – which mostly makes me want to know what the heck “Implementation Science” is. Definitely on my re-read list.

I found this at the Institute on Community Integration (lots of good research reports):

The Institute on Community Integration (ICI) at the University of Minnesota pushes the edge of inclusion through an intensive focus on policies and practices that affect children, youth, and adults with disabilities, and those receiving educational supports. ICI’s collaborative research, training, and information-sharing ensure that people with disabilities are valued by, included in, and contribute to their communities of choice throughout their lifetime. ICI works with service providers, policymakers, educators, employers, advocacy organizations, researchers, families, community members, and individuals with disabilities around the world, building communities that are inclusive.

They also have a number of training and certificate programs for those who are into things to put on your office wall (or your “I Love Me” wall as my once-upon-a-time military co-workers called it).

California training package on the new Statewide Individual Program Plan for the Regional Centers (California’s bizarrely outsourced Disability Services program). Basically, each of the state’s Regional Centers could previously do what they wanted for documenting (and running I think) their programs. So, decades later, California is finally forcing some level of standardization and accountability (kinda – not holding my breath, but glad to see it… I’d love the backstory on how this mess happened and who finally “fixed” it).

It looks like California is getting into supporting Inclusive College for students with Developmental and Intellectual Disabilities.

Upcoming California Conference on Universal Design for Learning. (Jan 30 and 31 2025).  I’ve got some doubts on UDL… probably a topic for a future newsletter – ping me if you want to chat about UDL.

$50B in annual spending highlights impact of travelers with disabilities – not a bad number, US alone in 2024 (along with their companions…) …. imagine the total disability market.

On dismantling the Department of Education (related to special education)… in short “How much worse can it get” … there’s kind of a point here, but this is a topic coming up soon.

It’s time disability reform became an election commitment (Australia) – let’s flip this – “How do we make disability reform an election commitment?”

GOP resists Biden and AFL-CIO-backed plan to raise disabled workers’ pay – because of course they do (the subminimum wage allows wages so close to zero that it might as well be – it is much worse than you think). Subminimum wage will be covered (I’m building up quite a backlog, aren’t I?).

Audit finds gaps in preschool special education – in New York (at least they are looking). Preschool Special Education is supposed to be covered and protected under the Individuals with Disabilities Education Act.

Lawsuit about “Whole Language” literacy instruction (after all this is America) – Parents Sue Literacy Experts, Publishers, and Schools; Who is Responsible, How Far Will This Go, and Why Does Big Pharma Come to Mind?

 
** Suggestions welcome!