Thread by @bethanylilly

Okay, there's a fight going on in my mentions, so let's do means testing for disability benefits 101.

First, people with disabilities rely on a f*** ton of benefits usually. This often includes Medicaid, housing supports via Section 8, nutrition assistance via SNAP, various state benefits, and some type of primary income assistance via the Social Security Administration.

Medicaid has asset/resource limits and income tests. The Affordable Care Act eased a lot of these up to the federal poverty level in states that opposed to giving health care to poor people.

I'm going to mention the federal poverty level several times in this thread. It's really f****** low. Way too low. No one should have to live on less than $13,000 a year. But, people DO live on less than that, so FPL can in fact be an increase for some programs.

So, Medicaid is means tested. This is particularly problematic if you have an expensive healthcare condition, because oftentimes, Medicare actually doesn't cover things you need. Or the drugs are really f****** expensive and you can't afford them even with Medicare.

Many many many many people "spend down" / impoverish themselves in order to access healthcare services via Medicaid.

Section 8 and SNAP are also means tested. SNAP also has work requirements (*which are b********).

It gets complicated re: benefits from the Social Security Administration. These could be Supplemental Security Income (SSI), Social Security Disability Insurance, Disabled Adult Child benefits, or a couple of other weird and small programs for people with disabilities.

SSI is means tested. SSDI is not. Disabled Adult Child benefits aren't means tested, but do have marriage penalties. The other programs also have marriage penalties.

But, if you need any of these programs, Medicaid, Section 8, or SNAP, it matters a lot what kind of Social Security Administration benefits you're getting. Because it is very possible that if you're not on SSI, you're over income for the means tested programs.

(None of this makes any sense. I would NEVER build a system that is anywhere near this complicated if I could build it from scratch today. But we're working with what we got.)

Congress has enacted a couple of exceptions. Disabled Adult Child beneficiaries often are eligible for Medicaid because they are born with or develop their disabilities very young and usually qualify for SSI at some point during their life and Medicaid carries over.

And there are a lot of people with low enough SSDI benefits, that they're dually eligible for both SSI and SSDI.

There are also programs in some states that let people buy into Medicaid who make more money and so won't qualify via the means testing pathways. These used to be called Medicaid buy-in programs for working adults with disabilities.

(I say "used to" because some states are now using that term to describe purchasing Medicaid coverage via the ACA exchanges and I think we're going to have to come up with another term.)

And I bring up Medicaid buy-in programs because if you are somebody with a psychiatric disability who needs an intensive support team or if you need personal care attendant services related to your wheelchair usage ...

... or you have a developmental or intellectual disability and need direct support or a senior who needs a home health care aide or somebody who relies on million-dollar drug treatments for a chronic condition, Medicaid is the only game in town.

Oops! Typo here. I meant to say, except in states that don't believe that you should give health care to poor people.

And Medicaid isn't even the greatest game! every state has a different set of disablity benefits and many of those benefits have waiting lists or eligibility criteria that require people to repeatedly be hospitalized or fail before you become eligible.

But, it's the only option, so people with disabilities with need for those type of intensive health care services have no choice. It's a poverty trap.

So how do we fix it? Let's start with means testing. We shouldn't have means testing.

If we are going to have a collection of weird segregated health care insurance systems (private employer, private exchange coverage, Medicaid, Medicare, etc), all of them have to cover disability services. No exceptions.

The federal poverty level needs to be fixed. People cannot and should not be asked to live on less than $13,000 a year.

This means that Social Security Administration benefits (all of them!) should provide, at a minimum!, whatever new FPL we set.

No more f****** marriage penalties. If you get married to someone who doesn't have a disability who doesn't need the programs, but you still have a disability, you get to keep them.

Okay. I'm going to stop there. Obvi, there is infinitely more work to be done than just these few steps, but hopefully this is at least helpful in terms of big picture thinking about the systemic s***show and poverty trap that people with disabilities face.

Okay, a few additional points made by various astute observers. 1) Dental care is not health care in this country and that is a national disgrace. Medicare doesn't cover it, Medicaid doesn't pay enough that services are available, and private insurance leaves it to the wind.

2) The paperwork burdens associated with each of these programs is massive and bureaucratically disentitles people. Especially people who have disabilities that make paperwork hard for them. You know. The folx by definition these programs are designed to help!

3) Currently, even after you're found eligible for SSDI, you have to wait 5 months for your benefits to kick in and 5 months plus 2 years for your Medicare to kick in. So, welcome to additional/faster poverty.

Also, vision care!