Sunday, July 29, 2018

Filmmaker's dilemma: independence and work, or life with son

By Louise Kinross

Imagine you're a young filmmaker with multiple sclerosis living in New York City. Your documentary When I Walk has won an Emmy. 
You're able to live on your own and work, because New York State Medicaid covers 24-7 care aids who come to your home. Then your marriage ends and your wife and son move to Austin, Texas.

Your symptoms worsen: you can't move your upper body or open your hands and blurred vision makes it hard to see. Because there's no consistency in state-run Medicaid, moving to be close to your son means losing home care and moving into a nursing home, where you can't set your own schedule or have a personal aid.

Yup. Stay in New York so you can live at home and work, or move to Texas to watch your son grow up from an institution.

That's the dilemma that faces Jason DaSilva in The Disability Trap, a short film he made for The New York Times. In the film, Jason researches Medicaid care in Texas and its bordering states, and learns that his only option for round-the-clock care would be a nursing home. So he trials one.

The contrast in care, and environment, is stark. 

What's the point of having health-care, if it's not portable within your country?

It would be interesting to know what the annual cost of care in a nursing home is, compared to the 24-7 aids who rotate shifts in Jason's home in New York. 

The Disability Trap is a disturbing look at how Medicaid coverage varies wildly from state to state.