Where is it Better?
I keep repeating the mantra “Much Better is Possible for Children with Disabilities and the Disabled Adults they will become”. I can say this with confidence because there seem to be a lot of places where things ARE MUCH BETTER for Disabled People (argh – almost never where I am!). So, It seems there are 3 options:
- Make things better where we are (or at least work the systems where we are better).
- Stay where we are and be extra unhappy (I’m a mathematician by training, so I list this for completeness, not because I think it is a good idea).
- Move to where things are already better (and maybe make them better-er there?).
Today, I’m going to dive into Option 3…
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Also in this issue, I’ll be…
* Gearing back up for my local in-person coffees starting in January.
* Thanking you again for subscribing (Happy New Year!)
* Responding to some more letters stay until the end… (keep them coming, please!)
But first…
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Organizing in California
An invitation for my fellow Californians… if you would like to help start a policy advocacy organization here in California, please sign up at: https://disabilityalmanac.com/dd-join/ . We’ll be “doing stuff” as we can, but we won’t officially launch until we have 100 California residents as founding members. (And if you live elsewhere and would like to start or grow a disability organization – send me a note, I’d love to help spread the word).
… and one more quick reminder…
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Weekly Coffee #68 – 8 January 2025
We’re getting together for coffee here in Palo Alto on 8 January 2025.
All are welcome. Please stop by or invite others!
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.
… and now the big THANK YOU
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Thank You Very Much For Subscribing!
Thank you very much for subscribing to Disability Drumbeat.
My goal is to help you help yourselves and your community navigate our disability systems, live better, and help make things better.
… which is a pretty absurd objective… but it should keep us busy together.
What disability-related problem is bugging you today?
Reply to this email… and I’ll see if I can dig up an answer.
All of the back issues are available at:
https://disabilityalmanac.com/category/drumbeat
I’m looking forward to hearing from you!
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Better… Where?… Let’s GO!
Back in 2017, I decided to host a school board candidates forum on special education for my old school district. I didn’t want to “GOTCHA” the candidates, so I pulled together some information from around California about special education and how our school district was doing to bring them up to speed… and I learned a lot.
I had no idea how badly my school district was performing by the numbers compared to others in the area (we had more than 26% of our special education students spending 40% or less of their days in general education compared to California at the time at 19% and the national average of 13%… so we were twice as bad as the national average and 50% worse than California as a whole!… and a lot of the academic metrics were similarly dismal).
I’ve become obsessed with disability numbers.
It is one of the sparks that led to this newsletter.
Very early on and up to today, I talk to parents who are unhappy with their local school and they want to fight.
While I could and can make suggestions as to how to try to make things better, why get into a fight if there is a better option – move somewhere better?
*** it is never that simple, of course (one of the main reasons our family is still in the SF Bay Area is that both my elderly father and my wife’s parents are here)
BUT, sometimes it IS that simple.
If there is a place where the schools are better, the benefits are easier to get, the services better, it is more accessible, …. and you can get there –
why not?
I want disability systems and services to be better everywhere for everyone, but I’m not going to sacrifice my son’s well-being to do so. I’d never ask any parent or disabled adult to make such a sacrifice.
- On one hand, I’m collecting and using data to support making things better where I am today (and sharing it so you can too).
- On the other hand, we can use this same data to give us options as to where to go now.
- On the other other hand, publicizing rankings and information about better systems will help others see that much better is possible.
The huge differences between states in the US (and countries around the world as I’m discovering) can give us inspiration to drive change where we are at and ideas of where we may want to relocate.
Random things I’m learning:
- Australia is building what looks like serious supports for its disabled residents but is actively unwelcoming to disabled immigrants (more research needed)
- Minnesota may have some of the best disability infrastructure in the US (definitely more research and… COLD!)
- The worst place (on Earth) to be a disabled American is in a US territory (no SSI)… but I could get it if I lived outside the US.
- There seems to be a locus for housing for adult disabled people in Arizona – why (warm?)
- … so many questions.
The data and laws and regulators and information are scattered.
What questions about “where” do you have? Are you interested in employment? Healthcare? HCBS waiting lists? Education?
Where are you interested in? Specific states? Countries?
(and of course, this can vary widely by disability and income)
Simply opening up to changing your “where” is kind of breathtaking.
Three years ago, we finally moved just 15 minutes south to change to a better school district – it hasn’t been perfect, but it is definitely better.
Is it time to become a Disability Nomad?
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Letters
A Common Confusion about ABLE Accounts
In response to my ABLE Account Doubts newsletter, a thoughtful reader shared a concern that funds from ABLE accounts revert to the state on the death of the beneficiary and that Special Needs Trusts don’t. This is NOT the case as far as I can tell. BOTH ABLE Accounts AND Special Needs Trusts are subject to Medicaid Clawback provisions – where state-level Medicaid can go after the funds of Medicaid users.
This is a cruel policy and we should fight it by moving towards Universal Disability Services Insurance… currently the only type of disability trust that is immune to this is a Pooled Trust. I’m researching some other strategies. If you know of something, please reach out!
(NOTE: some states do not do Medicaid clawback… another case of where “moving” may be better”.)
The Debt Collective
IB shared information about The Debt Collective and that working on disability-related debt is part of their work. Check it out.
Police Training from The Arc of New Jersey
The Arc of NJ ran this program “Law Enforcement Response to Crises among Individuals with Intellectual and Developmental Disabilities (IDD)“… to train police to safely interact with disabled people who may not respond as “typical”. This is a great program that we probably need everywhere. The contacts for the presentation and getting training set up in your community are: gro.jncra@sulask and gro.jncra@tlohr
