The Disability Nomad Paradox

HARD FACT: The single thing that you can do to have a better life as a disabled person or parent of on behalf a disabled child is to “Go where you are treated better”.

… become a “Disability Nomad”.

But almost all of us stay where we are already even though we know moving is better – this is the the Disability Nomad Paradox.

Moving to a place where the systems and services and whatever else you need work better (or much better) is going to have a massively bigger impact than anything a lawyer or advocate can get for you (or someone like me can share with you) about how to better work the systems where you are.

Moving is also going to have much more impact than engaging with your systems and government(s) to change things for the better (I say this as I continue to go to school board meetings and work to engage with our political systems).

So… why do most of us Stay Put?

I “stayed put” for years… even after I knew better.

Inertia?

Sometime during the Christmas break in 2017, I stumbled onto the US Department of Education (RIP?) annual report on the Individuals with Disabilities Education Act (IDEA). I was pretty shocked to find that California was either dead last or near the bottom for inclusion in the US with 19.7% of Students with Disabilities spending 40% or less of their time with their general education peers (or, more pointedly, 60% or more of their time in a segregated classroom). This was compared (if I recall) to a national average of 13.9% and top states at around 5%.

UGH UGH UGH.

I had no idea…. And it seemed no one else knew this either.

I was getting good at hunting for information, so I found the corresponding IDEA data for LEAs (Local Education Authorities – school districts to you and me) in California.

It was worse than I expected.

My school district at the time, the San Mateo-Foster City School District, was even more segregated than California with 27.something % of students spending most of their days in a segregated class… so,

…50% worse than California as a whole.

.. and twice as segregated as the US on average.

And that included my son.

… and I did nothing.

In the meantime, I was becoming an active parent in our special education community and, when asked, I often advised parents who could, to move to another district.

… and I still did nothing.. for almost 4 years.

“We’re doing you a favor”

Finally, things broke in the Fall of 2000, during COVID. A school official who we had trusted said that the services that they were providing during the pandemic were a “favor”. Not what our son needed. Not his right under IDEA.

We were DONE.

We decided to move, finally.

We moved to the best school district in the San Francisco Bay Area we could find for both our kids, but especially for our autistic son.

We chose Palo Alto.

It has worked out pretty well so far, though there have been some very rough patches.

Satisficing

The scholar Herbert Simon introduced the idea of “satisficing” (https://en.wikipedia.org/wiki/Satisficing) – deciding to choose the first acceptable option – and it sure fits in the world of disability.

Too often, we aren’t presented with all the available choices (almost no one teaches parents of disabled children – or disabled adults how our systems work) or context for those choices (such as the how a local system performs compared to others within your community, state, country, or elsewhere in the world.

So, we “choose” the single choice that is presented to us.

Think Globally, Act Globally

Ever since I saw that IDEA Report in late 2017, my brain has been broken about disability. There are other options than advocates and lawyers and Due Process.

Seeing how badly my school and state are doing in bureaucratic black and white unlocked two fundamental ideas:

• Much better is available – there are (almost always) places where disability systems are working much better today.
• Much better is possible – our disability systems can work much better than they do (and we can work to change that)
• Go where you are treated better – we do not have to accept poor services and supports. It isn’t anyone’s obligation to stand and fight, but, knowing that there is better out there also gives us a target to simply move to or toward a better system.

How good (or bad) are things where I am?

Is this good enough?

What are my constraints?

Constraints – Move? or Don’t Move? or Where to Move? That is the Question!

California is just a mess for students with disabilities (overall our schools are a mess – period). When parents ask me about schools, my first question is … do you have to stay in California?

Why stay?

In our case, my parents and my wife’s pare4nts were busy moving from being senior citizens to being frail and elderly. We felt (and feel) that we need to stay close to be available to support them.

We all have constraints.

Local Heroes

Even in places where the macro statistics are grim, there are great teachers, case managers, social workers, doctors and others who can make the local system sing like a violin. Ironically, this is particularly true in places where overall systems are a mess.

If you find such a gem, cherish them.

They may serve you better than a “better” location where your specific service providers are less competent.

Money

Let’s not pretend, money can solve a lot of problems.

Your money and the state’s money.

• I talked to some parents who were moving to Florida for their disabled child… not because the state programs were good, but because they found an excellent private school.
• The economics of some places outside the US mean it is possible to pay for the services you need on the private market and, combined with a much lower cost of liviing, make some countries an appealing option – just like for medical tourism.
• There are also some countries that have invested in excellent service infrastructures that you may be able to use (though your mileage can vary a lot if you aren’t a permanent resident or citizen).

Disability Collaboration

This stuff is hard. There are a ton of factors that will drive what solution is right and doable for you.

How doe we work together?

Share knowledge and experience? financially and politically collaborate?

This is a team “sport”… how do we work together to do better together?

.. how do we flip our systems from “minimally compliant” (maybe) to a “race to the top”?

Resources

IDEA Annual Reports to Congress – https://sites.ed.gov/idea/annual-reports-to-congress/

(California) Annual Performance Report Measures – Short summaries of special education program and student outcome data for California local educational agencies (LEAs) – https://www.cde.ca.gov/sp/Se/ds/leadatarpts.asp

Satisficing – https://en.wikipedia.org/wiki/Satisficing