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ICS’ Rachael Stacom Talks about Preserving Independence

MS & Spinal Cord Injury

ICS: MS Society Partner in Care

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March 5, 2019/by Regina Weiss, Communications Director Jason DaSilva, a talented artist and documentary filmmaker, is an ICS member with multiple sclerosis who has advanced to the point where he needs 24 hours of personal assistance. With these crucial supports in place, Jason is able to continue making the personal documentaries, such as 2014’s “When I Walk,” that have won him praise and awards, including an Emmy in 2015 for Outstanding Informational Programming.In 2018, the New York Times published a short, powerful film Jason made as an “Op-Doc,” a sort of editorial on video, called “The Disability Trap.” The film details a recent issue in Jason’s life that has threatened his independence after his partner took their son and relocated to Austin, Texas. From Top to Bottom While Jason lives in New York, one of the most progressive states in terms of Medicaid supports for people with physical disabilities, his young son lives with his mom in Texas, which is not only geographically distant but also on the exact opposite side of the Medicaid spectrum. It’s the largest of several states that have declined to expand their Medicaid rolls, even turning down extra funds from the federal government authorized by the Affordable Care Act to cover it. This disparity has had a devastating impact on Jason’s ability to be a real part of his son’s life as he grows up without sacrificing his own hard-earned independence. For months, Jason looked into solutions to this problem, traveling to Austin and speaking with Medicaid officials and local disability advocates, and recording much of his efforts on video. “I really do like Austin,” Jason says. “I like the people. It’s a great city. But New York is number one in terms of getting supports for low-income people with disabilities. Texas is number fifty.” Heartbreaking Honesty Jason’s film shows with heartbreaking honesty the choices this disparity was forcing on him. At home in New York, Jason is visited by an around-the-clock team of aides, all paid for by Medicaid, who compensate for his inability to move his legs, and increasingly his arms and hands, as he goes about his daily and nightly routines. But his distance from his son tears at him emotionally and constantly. He resolves to test the waters of living in Texas. Can he make it work so he does not have to make the stark choice between family and health care? Jason finds that there is simply no money in Texas’s Medicaid system for the round-the-clock personal assistance he needs. Medicaid officials in Texas cheerfully tell him that Texas does not typically support that level of care, and that Texans in Jason’s income bracket who need it are usually placed in nursing homes. States on Texas’s border—New Mexico, Oklahoma, and Louisiana—are no better funded. Jason resolves to see if he can live in Texas on its own terms. He checks into a nursing facility in Austin, thinking that even if he can’t get out at will to see his son, at least his son will be able to come to the home to see him. It’s a disaster. His schedule does not belong to him but to the nursing home. The staff are competent enough, but with a facility full of clients, they get to Jason when they can. He has no space to continue to do his work in film or disability advocacy. “I’m basically put in storage,” he says. “I should be able to live near my son without giving up my reason for living,” Jason says in the documentary. “Is that so much to ask?” A Solution While working on the film, Jason was asking that question of his ICS care manager Samreen Vellani, who, at first, found the problem vexing and brought it to her supervisor Sugenny Flowers. “When we were first talking,” Samreen says, “we thought it would not be possible.” As the main obstacle for Jason was getting his PCAs paid while in Texas, Samreen decided to check in with ICS Director of Consumer Directed Personal Assistance Services (CDPAS) Carmen Silva. Jason takes advantage of CDPAS, which enables him to choose, hire, train and fire his own aides, rather than leave those personnel decisions up to an agency. Carmen did some digging and found a rule issued in 2011 by New York State Medicaid that enables CDPAS participants to take their aides with them out of state for up to 15 days a month, as long as they arrange to pay their travel expenses and as long as they come back. Jason cannot praise Samreen and ICS highly enough. “Samreen got it,” he says. “She and her team saw this as an important social issue, and they really pushed this through.” Jason tested the arrangement in late August of 2018, when he flew to Austin for ten days. Now he’s back in New York hard at work on his five-years-in-the-making sequel to his first film, When We Walk, which he hopes to premiere next year at film festivals. While he can now make short visits to his son without endangering his life, there are still many complications. “This was a step in the right direction that needs more attention place on it to ensure it can work reliably,” he says. Jason is concerned that he still cannot move to Texas if he wanted to. And he is aware that he is not the only person with a disability facing similar impossible choices because they cannot move freely to states that don’t share the relatively enlightened policies of New York. Jason is lobbying for substantial changes to be made to the Disability Integration Act (DIA) so that he and many others with disabilities can enjoy the same freedoms to move as freely as the nondisabled can. “It may not be the final implemented solution, but it is a move forward and needs to start now,” he says. “This ought to be a national policy. Medicaid needs to be reformed and nationalized like Medicare. We live in the wealthiest nation in the world. We should be able to support people with disabilities, no matter what state they live in, so they don’t have to make these choices.” Tags: ACA, activism, adults with physical disabilities, Affordable Care Act, Carmen Silva, CDPAS, Consumer Directed Personal Assistance Services, disabilities, disability, disability rights, Emmy, health care, healthcare, ICS, ICS care manager, ICS Member, Independence Care System, independent living, Jason DaSilva, Mapping the Disability Trap, Medicaid, Multiple sclerosis, New York Times, NYC, people with disabilities, people with physical disabilities, physical disabilities, Samreen Vellani, Sugenny Flowers, Texas Share this entry You might also like

Jason DaSilva and the Impossible Choice

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Women with Disabilities and Breast Cancer: Know Your Rights

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