Economic Models of Disability

Burden, Indifference, Consolation, Compensation, Return on Investment, Investment, but mostly a Pity Patchwork. We need to understand how people think about disability to change how they (and we) think about disability!

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Welcome to Disability Drumbeat #13

Fellow Disability Changemakers –

This issue is a work in progress. The week was a personal slog. I’ve been working on holding my disabled son back in school (retention) to give him an extra year of academic education vs. “vocational training”, financial clean up after 10 months of being the power of attorney for my aunt, and supporting my wife and her family who are struggling with eldercare issues (new course? – Eldercare Navigator ? – sigh, working disability systems has been great training for elder issues),.

Join us for Wednesday’s Coffee Conversation on Disability (#69) here in Palo Alto, CA – at 830ish. Upcoming Dates here.
Working on Disability Financial Navigator Course. If you have topics that I should cover, stories to share, or questions, let me know.
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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.

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We are all in this together.

Steve
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Assume Rationality (and not intentional malice)

Hack #1 – Undoing Accidental Ableism – I find it so easy to get angry about how our disability systems work. I call it “Poverty by Design” and I mean it. BUT, I don’t think that the creators of the systems wanted to hurt disabled people… so, I’m always looking to understand why they made the choice they did – so, we can work to help them make a different (hopefully better) choice.

Oops, let’s not do it again (and move away from the “easy but inappropriate” Welfare Model of disability services).

Hack #2 – Find a Better Model – while working on this disability finance course, I’ve also been working on my aunt’s taxes. She is a military veteran who now has Alzheimer’s. What struck me this week was that she has gotten a disability pension from the military for decades, but she still was freely able to work and save for decades – all of the things that a US civilian with disabilities isn’t allowed to do. The military (and other services like the police and fire, I think), have a Compensation Model for disability (I think expressed in terms of % disabled),,, and this model is socially accepted.

Precedent – Great! Can we switch to this system

What are models of disability and how are they structured?

The Social and Medical Models of Disability. Is that it? What are they exactly? Our US disability services system seems to be built on two economic models – are those the only two options? Are there holes and opportunities if we step back and examine what we’ve done?

Social, Medical, Economic – the axes of disability? Is there really “a” social model of disability vs. “a” medical model? These seem more like human realms under which we can view disability through different lenses.

Perhaps it is useful to look at a different axis. The collective “non-disabled” society vs. the disabled individual?

Burden – disability and disabled people are a burden on society. Eugenicists, starting in the US, wanted to improve the species by ridding humanity of “defective” people (a gross misunderstanding of the new theory of evolution). Solutions were scary and overlapped with racism. Incarceration. Sterilization (with involuntary sterilization finally being banned in California in 2014!). Isolation and segregation (arguably a part of “special education” programs to this day). And even extermination (the Nazi T4 program of disabled people – referred to as “Useless Eaters” Unnütze Esser or “Life unworthy of Life” lebensunwertes Leben – was officially launched on 1 September 1939 and preceded the wider Holocaust).

Perhaps we need to make September 1st a Day of Remembrance?

Indifference – the non-model, model. Leave disabled people to work things out and navigate our systems on their own. This works out to be a de facto burden model as the way many of our systems operate is inherently dis-abling, more time-consuming and financially costly for disabled people and their caregivers. – “Disability Tax” or “Administrative Burden”- where our systems have the effect of being more difficult and costly for disabled people.

Consolation – as in “consolation prize”. Some support in recognition of the impact of a disability, but it isn’t designed to fully make up for the impact of the disabiltiy. This is where I see my aunt’s military disability payments, but it has no additional restrictions or oversight.

Compensation – In Special Education, disability services are divided into: Accommodations – alterations to the way a class operates to allow a student to access their education, Supports – technologies or tools or services, and Modifications – changes to the educational system when neither accommodations or supports are adequate. In some sense, Compensation is the financial equivalent. Payments to make up for systemic disability taxes or administrative burdens. Using money to “level the playing field” or creating equality of opportunity.

Return on Investment – looking at the lifecycle costs of disability services and supports to make policy decisions. The US seems to be substantially underinvesting in special education/education for disabled learners as the long-term economic costs of poor education relative to future tax revenue or reduced need for services:

We found that the estimated benefit-to-cost ratio suggests that every $1 spent in the VR [Vocational Rehabiliation] program returns $2.9 for the VR client within a 3.5-year window after initial VR service. Because VR agencies do not incur further costs after clients exit the system, the improved labor market outcomes will likely persist over time. Next, we estimated the lifelong ROI and found that the estimated benefit-to-cost ratio suggests that every $1 spent in the VR program returns $21.5 for the VR client within a 43-yearworking life span after initial VR service.

The additional income (and therefore taxes) that might be available if disabled adults could work and accumulate assets without penalty while still accessing SSI disability income and Medicaid disability services has not been researched as far as I know.

(Human) Investment – what is the potential of a person? In real estate, they use the term “best and highest use” for a property – investing for its maximum potential. As a parent, I hope to achieve this for my kids. Of course, as a parent of a disabled child, I’m constantly confronted with the challenge that if I don’t have high aspirations for my son, who else will fight for him?

The Pity Patchwork – I started calling my son’s health insurance-funded services “pity services” pretty early on.

Services provided not because they thought that they could help or support or unlock my son, but because of some sort of obligation.

There didn’t seem to be any medical logic to them. In-home therapy was totally disconnected from Occupational Therapy or Speech. There was no strategy pulling things together and the therapies themselves seemed to lack any treatment strategy – or even basic understanding of his autism. Too often, school looks the same way. We relentlessly push our goal of a “real high school diploma” if at all possible for as long as possible. We have a theory. The system doesn’t seem to have a plan – except pushing him along through the system until he is someone else’s problem. As I’ve looked into our disabiltiy services system, it kind of feels the same.

Society feels some obligation to “Do Something”

– but it doesn’t have a goal. Just a patchwork of services – each added in crisis to crisis, complaint by complaint and lawsuit by lawsuit.

Is this the pattern you see? Are these the models that you think we are using? or should be?

For my son’s education, we have an educational model for him. We’re working it. It drives where we spend our time. Which battles we fight and which we ignore. It is the same with our financial planning for him.

This has helped me when I talk to organizations and officials. When we have a model, we can question it. Change it. Improve it. Until then we’re just stumbling along.