The Cruel Disability Financial Squeeze
There are ways to “work the system” to provide some financial support to disabled people. But, as a whole, our disability services have the effect of denying many disabled people the financial potential and autonomy that non-disabled people expect as their birthright.
Instead of a system that provides supports to lift up disabled people (providing supports, accommodations, and modifications) to fully participate economically, our systems instead add insult onto disability… making economic life more difficult and limiting freedom, autonomy, and life potential.
Direct costs and impacts of Disability Itself
No one pretends that being a disabled person will have an impact on your life and livelihood… but this is just the beginning.
Default Inaccessible
Our world is largely inaccessible to disabled people by default. If there is an “accessible” option, it may be paid or have an administrative burden to be able to access the service or support. We have to re-certify my son’s autism every year to access state disability services (through the regional centers here in California), health insurance, and programs provided by our health insurance… this will only grow when we will need to deal with financial programs like SSI / SSDI / etc.
Everything has additional forms, meetings, … perfect for people who love papaerwork and bureaucracy… and beware doing anything wrong.
This is in addition to all of the process required to support his special education programs (more meetings, paperwork, assessments, …) over and above working with his teachers and team members to actually make his education program work.
Disability Tax – the Direct Costs of Disability
In addition to time, it costs additional money to access disability services. When we were getting therapy 5 days a week for my son, we had a co-pay every day and hit our health insurance out-of-pocket maximum in a matter of months. A $30 co-pay is often not a big deal if you have one or rwo a year… it is something quite different when they come every day. I’ve heard that the annual extra out-of-pocket costs for an autistic person are around $5000 to $7000 per year. The experience of other people with other disabilities is obviously going to vary widely. The costs for people to take time off (or go without pay) to deal with administrative burdens and such is also substantial.
Mandatory Impoverishment
As I’ve discussed at length elsewhere, our disability benefits program require disabled people to be poor to be eligible for services… and the costs of these services if provided privately penalize working and make individual wealth building or caring for their family (or even having a family in some cases as getting married may make you ineligible for services).
Stripping Financial and Personal Autonomy
Our disability service systems either flat out deny financial options and autonomy that the rest of us take for granted. It is hard to move to a different state or different country (you can take Social Security with you if you live abroad, but not SSI). While I’ve described ways to use Trusts to protect financial assets to benefit disabled people, these trusts are not controlled by the disabled individual – even if they are otherwise capable to make decisions for themselves and control their own financial future.
Subminimum Wage
Even getting paid a real salary for work is denied some disabled people. There is no minimum wage to protect certain disabled people from abuse and these systems have been abused badly.
All of this is a choice.
We could structure our disability programs to unlock the future and potential of our disabled fellow citizens instead of keeping them down and marginalized.
