How Health Care Makes Disability a Trap | Op-Docs

America’s the place for people that freedom to move where they want to work to be close to family can build the life they want at least that’s not supposed to be but people with disabilities can be denied that for you and end up in the disability trap this is me I’m a documentary filmmaker I may have a severe disability so that drive to be independent in the year 2006 I was diagnosed with multiple sclerosis my most recent film was about my life in Spanish Everest is a neurological disease where your white blood cells attack your nerve endings decorating your brain for the body consequently there’s a gradual decay in your Mobility the film Sundance Film Festival later when my dreams came true when the film won an Emmy and the winner goes to just wore that’s dedicated to all people disabilities around the world that are putting their stories on screen so true when my son they was born today best thing that ever happened to me I watched Jay Rock all the way to his 3rd birthday and then he was gone things are not working out between his mother and me as many as 50% and then separation for caregiver burnout she decides to leave she found a job fire with my life in New York City I need to find a way to be even though are life dreams are sometimes put away from us symptoms of God from bad to worse since they’ve been gone I can’t use my upper body anymore I can’t even open my hands and my vision is extremely blurry at least I still live independently I have a rotating crew of Carrie covered by New York Medicaid see if you come by friends and everyday at 8 p.m. they have a change living at home resume I drink my nonprofit and being the voice for people with disabilities this is losing this would be the end the end of my activism and the end of May but losing my son has made the past year-and-a-half impossible did you have fun on your birthday party I have to move to Texas my mother comes for a visit to support and help me gain some perspective you want to live in Austin Texas go to be what you love to do that mean documentaries and then we die anyway I want to be around my son but I need to find the same car again here in New York I start doing research on state rankings for the Medicaid programs these rankings are there people disabilities Medicaid support is complete Cave Run state by state there’s no consistency for supporting people at disability Wall New York isn’t the top 15 overall it’s number one specifically for reaching people with disabilities in what exit is deadlocked I attempt to get the same Healthcare I get you New York in Texas navigate to Texas Texas if we can’t live in Texas at least I can try and living important the opposite of living independent at home is living in a nursing home nursing home by daily living I would have no control what time you wanted to leave or what time you want to bet anything beyond the basic necessities would be extinguished no work no independent no Freedom Healthcare Scituate looks bleak but there has to be a way I can find out more about my son I want to cheer for him after his first soccer goal I want to watch him cute slide tackle and take my first game after so I can explain to him that sometimes life hurts but you always have four you have to pick yourself up a few others with severe disabilities living in Texas traumatic brain injury caused by programs for disabled people we were in a car accident how long ago 8 it look like there was life in her eyes but no life in her body I don’t buy it I’m not buying this whole National and state mindset does relocate to a different state or should be at least No Interruption of services transmission or a miter. It’s almost like you’d have to reconfigure your life entirely Jason because I just can’t see that you could come here because your son and find yourself in the position that the only way you can get the carrier needed from the nursing home and on yourself again isolated from the I don’t have words to describe how sad this is I should be able to live near my stand without giving out my reason for living is that so much to ask why should people does buddies like mine be forced to make these impossible choices but I’m willing to investigate and easy so I check myself into a nursing home the staff here are professionals they doing okay but I have no freedom of movement no way to do my work or continue my activism I’m just put into storage regular I just can’t do it I wish more than anyone between the two things that make my life meaningful my son and my life’s work the healthcare I need my career nobody ought to be forced to make these choices no matter how far away my son I will never abandon you
“America is a place where people have freedom to move where they want,” says filmmaker Jason DaSilva “At least that’s how it’s supposed to be.” But as DaSilva shows in his new Op-Doc, “Mapping the Disability Trap,” the way healthcare works in the United States can end up denying people with disabilities that freedom.

The film follows DaSilva on a spirited investigation of a maddening Catch-22 that prevents him from moving to another state to be closer to his son — and still get the care that his multiple sclerosis requires. In a sense the film is a heartbreaking expansion of DaSilva’s previous Op-Doc, “The Long Wait,” which showed in excruciating (and humorous) detail how hard it is to get around New York City in a wheelchair.

The Long Wait:

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