Latest news with #spinalmuscularatrophy
CBS News
28-05-2025
- Business
- CBS News
University of Michigan student on Medicaid worries about future amid looming federal cuts
President Trump's "big, beautiful bill," which passed in the House and is now awaiting a vote in the Senate, aims to reduce Medicaid federal spending by nearly $700 billion. Under the bill, millions of Americans could lose their Medicaid coverage. In Ann Arbor, University of Michigan student Vincent Pinti is earning a combined public policy and law degree. He uses a wheelchair due to a genetic condition called spinal muscular atrophy. When he graduated from high school, the West Virginia native searched for the most accessible campus in the country. "The University of Michigan was rated as the most accessible university in the United States," said Pinti. "And I had the notion to believe, well, if it's rated this highly, then all the supports and services that I would need would be in place here. Unfortunately, it wasn't the case." Pinti had to advocate for his needs and spent months navigating red tape to receive care under Medicaid, which differs from state to state. "I have 24/7 caregiving," he explained. "I have around 17 students that provide my care each week. Throughout my day I'll need anything from help getting out of bed in the morning, to going to the restroom, to having access to food, to having access to food. During the school year, they help make sure I can go to and from classes." Such round-the-clock care costs roughly $150,000 a year, but thanks to Medicaid, Pinti's needs are covered—for now. "The budget bill that was passed in the House this week will quite bluntly be catastrophic for people currently on the Medicaid program," said Pamela Herd, one of Pinti's professors. "You're looking at pretty massive cuts, a lot of additional complexities that are going to be added to an already complicated program. An expert in disability policy, Pinti says she understands the challenges he is facing now and in the future. "And the simple fact of the matter is they wanted to cut hundreds of billions of dollars from the program, and they've designed a bill that will do just that. And it's people like Vincent who are going to pay a high price for those cuts," she said. "With Medicaid, I might not be eligible for it going forward because it's really hard to simultaneously work and be on Medicaid," said Pinti. "When I finish college and I get a degree, Medicaid, it requires that you make under $30,000 a year. It says that you can't have more than $2,000 in assets at any given time. "So basically, I have a choice I have to make where I'll have to choose between having a full-time job and burning all my income on healthcare services or remaining on Medicaid and not having a career." Recent cuts to the U.S. Department of Education meant Pinti lost $20,000 in annual grants for students with disabilities. "We're trying to navigate a world where it seems like disability services and supports for our community are getting slashed left and right, and it doesn't seem like much thought is going into it," he said. "And real people, such as myself, are getting hurt."
Daily Mail
19-05-2025
- Daily Mail
Disability activist left in tears stranded on a train platform after station staff 'called her rude and repeatedly refused to get a ramp'
A tearful disability activist has claimed she was left stranded on a train platform after rail staff branded her 'rude' and denied her vital ramp access. Anna Landre, a wheelchair user, was set to travel from London 's Liverpool Street station on May 18. Arriving 'several minutes before' her train was due to depart, the 25-year-old said that she had enquired with members of staff about a ramp, vital in order for her to be able to board the train. However, Ms Landre, who lives with spinal muscular atrophy, a rare genetic disease, was immediately informed that was deemed to be of 'lower priority' than other passengers who had pre-booked a form of assistance. Describing the interaction as 'very abled-mansplaining', Ms Landre took to X to outline the stressful ordeal, adding: 'I firmly but politely told him that I know the law and did not need a lecture. 'He continued on and I repeated myself and said I was just looking to the next train since they'd failed to bring the ramp for the original one.' To Ms Landre's dismay, the member of staff then outright refused to assist her any further, branding her as 'rude'. Then, after speaking with another, she presumed to be more senior staff member, the American activist was told that, given accusations of her 'rude' nature, she would be denied ramp assistance by 'any' staff member in the station. Ms Landre, who moved to the UK three years ago after studying in Washington DC, was banned from boarding any trains from Liverpool Street Station and eventually forced to return home. Firmly denying any allegations of rudeness, Ms Landre added: 'I believe this able bodied man did not enjoy a young disabled woman speaking assertively back to him in the same tone he was using. 'And regardless, 'rudeness' is not the standard for denial of ramp assistance. Abusiveness is, and I was certainly not that.' Following the harsh conversation, Ms Landre admitted that she was even brought to tears, feeling 'so powerless and victimised' by the unapologetic rail staff. Having since requested body cam footage of the interaction, she said: 'The fact is, disabled people reacting with anything other than gratefulness and deference for being granted basic human dignity is often perceived as rudeness. 'The power nondisabled people have over our lives to enforce that dynamic is extraordinary. 'No trains for me today.' Social media users were quick to express their utter outrage at Ms Landre's seeming mistreatment by staff, with one branding it 'absolutely disgraceful', while another described it as a 'despicable power play'. One commenter, who described the denial of service as 'absolutely appalling', added: 'They work in customer service, they should be trained to deal with 'rude' people (not saying you were) and it is certainly not a reason to deny you assistance. They should have been apologising for not having the ramp there in the first place.' A Network Rail spokesperson said that Ms Landre's incident was being investigated 'as a matter of urgency'. They added: 'We want to make our stations as accessible as possible to all of our passengers and we're sorry to hear about the issues one of our passengers experienced at Liverpool Street station today.' MailOnline has contacted Ms Landre for comment. Her experience comes less than a year after Lady Tanni Grey-Thompson reported being forced to crawl off a train after rail staff refused to help her. The gold-medal-winning Paralympian, 55, said she arrived into London King's Cross station at around 10pm in August last year and that there were no workers there to help her. The wheelchair racing champion, who is now a House of Lords crossbench peer, was on the 7.45pm service and had praised rail staff who kept checking on whether or not she needed food. The train got into the station just after 10pm, and she posted: 'Hey LNER my train has arrived at KGX and there is no one to get me off.' And just minutes later: 'Cleaning crew are on board.' And then: 'Cleaning crew are now leaving the train!!!!' The Baroness continued posting, desperately trying to find out who could help her. She wrote: 'LNER who do I need to call to get off this train!!! It got to KGX 10 mins ago!!!!!' At 10.24pm she said she'd had to crawl off the train. She posted on X: 'Well I've just crawled off. 'At 22.17 (train got in at 22.02) I decided to crawl off. Had to move all my stuff onto the platform. Member of cleaning staff offered to help. They're not insured.' In response, LNER apologised, with a spokesperson stating: 'We are sorry to understand there has been an issue at London King's Cross station on Monday evening. 'We are in the process of investigating this and are in contact with the customer directly.' LNER's Managing Director David Horne also replied to Lady Tanni's post, saying: 'My sincere apologies for this Tanni. 'Something has clearly gone wrong here and we've let you down. We'll investigate what went wrong and share the details.' In August 2024, Ms Landre was also left in tears after she was unable to collect her Freedom of the City of London award on stage as there was no ramp at the ceremony. Describing the incident as 'absurd', she claimed it was an example of the 'access roulette' disabled people are forced to face in everyday life. According to the wheelchair user, organisers were aware she would be attending the event and assured her there would be wheelchair access. But instead the researcher and consultant was made to 'quietly accept my Freedom of the City from the floor beneath the stage'. A City of London Corporation spokesperson said: 'The City of London Corporation would like to offer our sincerest apologies to Anna Landre for the inaccessible stage upon receiving her Freedom award. The City of London Corporation is fully committed to equity, diversity and inclusion and we are undertaking an urgent review to ensure accessibility at our buildings, facilities and events.'
