Hacking the Disability Operating System

All of us get to the point where we realize that the various systems inside the “Disability Operating System” don’t really work to serve us. And that if we want better outcomes for ourselves and for the people we love and care about… we need to start working the systems instead of them working us.

And we realize we have to become Disability OS hackers.

The Disability OS Hacking Levels

The levels of Disability Operating System hacking:

• Newbie – where we all start. You do what they tell you to do – Why wouldn’t you you trust them? …they must have your best interest at heart!
• Basic – you play the game mostly the way you’ve been told to play the game. A lot of of us stay here at this level as long as things keep working.
• Proficient – you’ve learned the rules and you know how to work with within them.
• Personal Hacker – either things have started to go wrong or you aren’t satisfied with how things are going or where they’re going. You start looking at how the system really works what pieces you are missing. You begin to work the system instead of having the system work you. This isn’t malicious or devious, this is working the system with your eyes open.
• System Hacker – you start looking at how you can change the system not just for yourself but for others. You are working to change the systems within the system… ideally to get it to work better for everyone
• Augmenter – you see where there are holes in the system or systems of systems and you find ways to fill those those holes. Perhaps you’ll become an advocate, or a lawyer. Start nonprofit or company and work to change the disability ecosystem without changing the underlying disability systems.
• Changemaker – you see the problems in the system and you do the work to make changes to the systems themselves. Maybe you run for office or file a lawsuit or engage in policy advocacy. You work the basic policy and political systems to change the basic ecosystem in which everything operates.

To be a disability OS hacker you have to have a clear eyed view of what the systems really are that we are actually working with. How they actually work as well as how they’re supposed to work on paper and – perhaps more importantly than anything else – how people work within the systems.

You need to find the places where you can make a modest effort to get big results. You’re looking for arbitrage. Where there are levers in the systems.

Case Study – What the Heck is IHSS?

I finally found out about IHSS – In-Home Supportive Services which pays family caregivers to support their substantially disabled children or adults – while I was out at a picnic.

I learned that to become eligible for IHSS, the disabled person needs to be part of Medicaid (Medi-Cal in California – some states like having fancy names) and in order to be in Medicaid as a disabled child (in California), you needed a Medicaid referral from your Regional Center (and you have to apply for the Regional Center.. it is good to have a suitable medical or school developmental disability diagnosis). NOTE – if you are not in California, most states have a Department of Disability Services or something similar. Bizarrely, California outsourced these services to a network of not-for-profits… I have thoughts and they mostly aren’t good ones.

Am I using IHSS?

No. but I might and it is very useful for me to know it exists and hopefully useful for you to know it exists. Even if you live in another state, knowing that there is a Caregiver Support program in California can give you a leg up to look for a similar program where you live (the news is not good… maybe it is time to be a Changemaker).

Case Study – ERMHS

In my old school district ERMHS (Educationally Related Mental Health Services) was kind of a dirty secret that was provided only through the County.

A good friend of mine had a lot of trouble finding an access accessing those services even though they were a school board member and a lawyer. In my current school district, it is provided at every school.

Whenever I talk to parents who have children with disregulation challenges (or behavior issues), I always make sure they are aware of ERMHS… just in case.

Things work so much better when you know a solution exists or probably exists somewhere rather than flying blind.

Leverage

This is a long game. The more we work together the better we can do for each of us. We are not like the individual rogue hackers in movies or books.

If we make small systemic changes together that help everyone, we make things a bit better for everyone going forward and we can make things a bit easier and better progressively.

By helping others we multiply our leverage across our community.

Not just do a one shot to help ourselves just one time

The problem we face when dealing with a disability systems is that we typically face one problem one time. Or if it is a system, like IEPs for special education… or applying for services, I may only deal with it one time a year…

There aren’t a lot of chances to learn.

Over the course of my son’s whole period in special education starting at age 3, we may have 20 or 30 IEP meetings. Total. By the time we get good at them, our son will be in high school and it doesn’t make that much difference.

If we’re fighting a battle with a state bureaucracy, we do it once and if we figure it out that knowledge gets lost in our heads.

Reps

I’ve now hosted over 100 special education and disability coffees. The other coffee regulars and I have been exposed to and talked through many, many, many, more situations and problems than any of us would’ve ever encountered on our own.

Instead of 20 to 30 reps spread over 12 to 15 years. We’ve had 100 reps in just over two years.

It’s like going to the disability OS gym!

More, Better, Faster

I hope these articles help you become a better Disability OS hacker faster without having to go to 200 coffees!

My big hope is that if you can address your own personal needs more easily you’ll have more time and energy to help things make things better for everybody.

More leverage for us all.