Jose Hernandez, hometown hero, peer mentor, disability advocate and power wheelchair user, will be attending Roll on Capitol Hill along with other prominent disability advocates. He will urge his representatives to provide people living with spinal cord injuries and disorders in New York greater access to community integration and complex rehab and wheelchair technology.
Hernandez has used his experiences conquering the hurdles of living with a disability, to mentor others with a spinal cord injury or disease, including those in nursing homes who are trying to reintegrate into their communities.
“After sustaining a spinal cord injury, you’re going to have a hard enough time adjusting to your new body and in a lot of cases these individuals are being placed into nursing homes,” said Hernandez.
Hernandez has visited nursing homes here in New York City and has seen individuals with spinal cord injury as young as 16 years old institutionalized. Some of these individuals are being institutionalized 10 years or more.
“The saddest part about it is the loss of potential that they will never regain. It’s like a prison sentence and your only crime was being or becoming disabled,” said Hernandez.
Now working as a Program Specialist with United Spinal Association, Hernandez looks forward to helping more individuals with SCI/D on a national scale.
“There are so many people with spinal cord injuries and other disabilities that don’t have a voice. If I can I will share my voice with all of them,” he said.
On the state level, Hernandez also dedicates time advocating to improve in-home treatment and care for others living with SCI/D, recently meeting with senators and congressmen to urge higher minimum wage of home care workers in New York. Currently the minimum wage for home care workers is $11 per hour, which is the state minimum.
“Individuals like myself have a hard time finding and retaining qualified home care attendants willing to work for minimum wage when they can go out and work for McDonald’s and make more,” said Hernandez.
The road to self-advocacy started early on for Hernandez as he sought answers to the new challenges he faced living with tetraplegia and having to use a wheelchair.
“I had a lot of government agencies telling me how I should live my life. Not knowing any better, you go along believing that they have your best interests at hand — but they don’t. That’s when I decided to start helping individuals with disabilities with my first-hand knowledge of advocacy,” explained Hernandez.
Roll on Capitol Hill has been a life-changing event for Hernandez. Now entering its 6th year, the Roll has become a valuable platform for United Spinal member advocates to lead the charge to protect disability rights.
“I remember my first Roll on Capitol Hill. As I stood outside the reception door, looking inside at all of the people attending — fighting for what they believe in and representing thousands of individuals with disabilities, I couldn’t help but get emotional,” recalled Hernandez.
Beyond community integration and complex rehab technology, Hernandez is concerned with the potential impact of the Affordable Care Act (ACA) repeal.
“The current administration should invest time and energy in repairing or restructuring a system that has been working and getting people healthier, rather than replacing it with something that would be a death sentence for many individuals,” said Hernandez.
As Hernandez continues to fight to improve disability rights, he acknowledges his late mother’s strength and perseverance as a major influence on his attitude toward his injury.
“She never gave up during her 13-year battle with cancer and illness. It rubbed off on me. No matter how hard my day and no matter how bad I feel, I get up out of my bed and push on with life.”