In the United States, there is a program called "Medicaid". Actually, it isn't just one program.
Quoting from the Medicare government website:
"Medicaid is a jointly funded, Federal-State
health insurance program for low-income and needy people. It covers
children, the aged, blind, and/or disabled and other people who are
eligible to receive federally assisted income maintenance payments."
Another website, called Medicare Interactive, adds:
"Medicare and Medicaid
are two different government-run programs that were created in 1965 in
response to the inability of older and low-income Americans to buy
private health insurance.
They were part of President Lyndon Johnson’s “Great Society” vision of a
general social commitment to meeting individual health care needs.
Medicare and Medicaid are social insurance programs that allow the
financial burdens of illness to be shared among healthy and sick
individuals, and affluent and low-income families."
But, too many people think that Medicaid is a program for people on welfare, and dishonest ones at that. In other words, there is a big stigma surrounding Medicaid. That's ironic, as Medicaid, just as one example, ends up paying for the nursing home care of many of our elderly.
It also pays for many programs for developmentally disabled individuals, including Bil.
Which brings us to the beginning of our advocacy journey for Bil. Let's go back to the early part of this century.
We found out there was something different
about Bil from any of the other people with disabilities working at the sheltered workshop where he was employed.
The difference was that Bil was the only client working at the workshop who was not on Medicaid.
And, without being put on Medicaid, the local ARC (a national advocacy group for those with physical and intellectual disabilities) could not help Bil.
Medicaid provides a means for disabled citizens to get needed services -
in many states (not New York, which offers a waiver under a different
name) through something called a Katie Beckett waiver.
(The story of the late Katie Beckett, who died at age 34 in 2012, is a story worth reading.)
These waivers form a crazy quilt of eligibility and a system that is cumbersome, and
difficult to maneuver through, to put it mildly. I am far from an
expert, but I know more than on that day when I found out because Bil wasn't on Medicaid, ARC couldn't help him. I know that system is
broken, and people like Bil, and the people who want to help those
When I found out Bil was
the only person in his sheltered workshop not on Medicaid, I also found out the reason. Bil's parents believed people should not be dependent on government. They had
worked hard all their lives. Nothing had been given them. And they
didn't feel they should take from the taxpayer.
The stigma Medicaid holds may have held them back, too. At any rate, they never applied.
were to find that, to get any help for "B", any services (including,
eventually, housing for him) we had to go the Medicaid route. That's
how the system works in New York and, perhaps, in the rest of the United States.
And so, the journey began to where we are today.