I have had a difficult start to my life. I was born prematurely and I have cerebral palsy spastic diplegia. As a result of physical abuse from a caregiver in 2002, I’m now a paraplegic.
The authorities were told about the abuse. I was advised not to file a report because the abuser was a drug mule for a cartel. Alta California Regional Center was the entity that provided the funding for the care that I received at that time. They were told several times that the abuse was happening but did nothing because I was getting services that I needed and that’s all that mattered to them even though I was getting abused. During this time, I was a patient at the University of California-Davis Medical Center in Sacramento. The medical center was told three times. Each time a different department was told. They did nothing.
I now get care hours through the In-Home Supportive Services Program in Sacramento County. When I first started the program, I had caregivers that were convicted felons, known gang members, people with multiple personality disorder, verbal abuse, and people lying about their experience or skill set just to get the job even though there is a required background check. The caregivers also stole from me, didn’t show up for work, showed up for work 6 or more hours late, ate food in my refrigerator without my permission, I had to answer phone calls at all hours of the night from people looking for my caregivers, the caregivers used my personal toiletries without permission, and they didn’t complete the required tasks or the caregivers completed them half way. I currently have caregivers that are very good.
The new healthcare bill that was revealed this past week discontinues the program that pays for their services and, instead, puts me in a nursing home where I will be subject to neglect, the increased chance of life-threatening sickness, theft of personal items, and possibly rape by caregivers, etc. Being in a nursing home would also cost the state much more than it does if they pay for my at home caregivers. The new healthcare bill will take away the goals, hopes, and dreams of people with disabilities (as well as kill us) who need the services that they each day to work and be productive members of society like everyone else.
I currently work for the State of California in a job that is very low paying. My university degree, work ethic, and willingness to take on extra work is looked upon as a bad thing.
For sixteen years, I’ve tried unsuccessfully to get a better job that is doing something that I enjoy, is able to challenge me and help me expand my skill set, and help me pay for my disability-related expenses on my own and get off of Medicaid/MediCal. I would prefer to work rather than sit at home and do nothing all day or be in a nursing home. I have sent out over 10,000 state job applications and over 11,000 private sector job applications in the hope of finding a job that will allow me to pay for all of my expenses (including my disability related ones) on my own without having to rely on Medicaid/MediCal for help with the disability-related expenses. The abuse and the resulting injuries made my disability-related expenses go up a great deal. It is better for a disabled person to be able to make enough money to afford all of their life-sustaining expenses as well as their disability-related expenses on their own instead of having to rely on Medicaid/MediCal.
My family didn’t have much when I was growing up but we had just enough to make it each month with nothing to spare. Many people think that I should live now how I grew up with just enough to get by each month. I want something more out of my life. I want to be a productive member of society and live my life the way that I want to instead of someone else dictating it for me. I want to be able to afford the disability-related items and equipment and life’s necessities my own.
In recent years, I’ve had so many of my goals and dreams destroyed because of other people’s actions throughout my years in civil services and as I try to transition to the private sector. I recently applied for a ticket taker position with the NBA’s Sacramento Kings at the new Golden 1 Center. I wanted the position to get experience so that I can get a job that pays well enough so that I can cover all of my expenses (including my disability-related expenses). I was blatantly discriminated against because of my disability. Employees of the Sacramento Kings organization asked each other (loud enough so that I could hear it) why I hadn’t been prescreened out because of my disability. I applied for this position because I wanted the experience and I even offered to volunteer. I was lied to by Kings employees and told that I would be called back for a second interview (I wasn’t called back). It is a position that can be done by a person with a disability in a wheelchair. I contacted the NBA league offices who said that there was nothing that they could do because they were just the league and the team is privately owned. I did let the league official that I spoke to know that there is an obvious need for education regarding people with disabilities in that organization. I was really hoping to use the experience to help me transition to a position in the private sector with a global company.
It saddens me that this blatant discrimination can occur in one of the organizations within a league that prides itself on diversity. People with disabilities can offer many things to companies and organizations so that “no, you can’t” turns into “yes, you can”. There definitely needs to be more education on what people with disabilities can do. A disability shouldn’t mean a life of poverty like it currently does in the United States.
For 5.5 to almost 6 years, I have been putting in 21 hours learning new languages, information technology skills, and management skills so I can get the new, better paying job that I really need. I go to work every day even though I am in constant pain because I am that determined to achieve my goals. Please help myself and other people with disabilities in the United States.