My earliest memories of disability did not come from my own experience with dwarfism and hearing loss, but through my grandfather, Irv, who experienced a massive stroke shortly after I was born. The stroke resulted in full paralysis on the left side of his body and my grandfather required full-time personal care thereafter. Like many Americans, he became disabled later in life.
My grandfather’s story is not unique; in fact, one of the significant challenges our country is facing today is that we are aging and consequently aging into disability. According to the U.S. Census Bureau American Community Survey, 70 percent of adults older than the age of 65 will need homecare supports in their lifetime. Since approximately 14 percent of our country’s population is older than 65, this means roughly 4.4 million Americans will need homecare in order to continue living independently in their communities.
My colleague, Alice Wong, wrote an excellent article published on Disability.gov’s blog, entitled “Consumer Directed Personal Care as a Human Right.” In her post, she describes the cost-effectiveness of personal care versus nursing home care and/or other medical institutions. As she notes, California spends three times more on nursing facility care ($32,406 per user) than home and community based services ($9,129 per user). She also discusses the value of consumer directed personal care programs like In-Home Support Services (IHSS) in California and describes the tremendous impact they have on keeping individuals with disabilities living and working in the community.
Unfortunately, there is still a gap in services for many people with disabilities, as not everyone has access to government care programs. To qualify for programs like In-Home Support Services, an individual must meet Medicaid eligibility criteria. Typically, this means having limited assets (less than $2,000 per individual) and a total income below Social Security’s Substantial Gainful Activity Level (currently $1,090).
This past October, I accompanied fellow coworker, Maisoon Sahouria to the College of San Mateo for the first of her three-part workshop series on advocacy, effective communication, and disability rights. The workshop was an undeniable success, as the attendees (this advocate included), were educated on how to better advocate for themselves and their community. These skills proved incredibly useful shortly after leaving the college.
After the workshop, Maisoon and I decided to take the SamTrans 250 bus back to the CID office. Exiting from Perimeter Road, we walked down West Hillsdale Boulevard toward the intersection of Clearview Way. Upon reaching this intersection, we found that there was not a single curb ramp in any of its four corners.
This intersection is not only important for local businesses and the residents living in the area; it is also the closest SamTrans fixed route stop for the College of San Mateo. Anyone leaving the college using a wheelchair, walker, cane, etc. wanting to ride the SamTrans 250 or 294 busses, would somehow have to leap off of the seven inch sidewalk on the northwest corner of the West Hillsdale Boulevard intersection.
From there, one would cross West Hillsdale Boulevard only to find another absent curb ramp on the other side of the intersection. In order to access to the eastbound sidewalk of West Hillsdale Boulevard that person would then have to travel for over 350 yards on the road of the incredibly unsafe West Hillsdale Boulevard.
Here, they will find their first curb ramp with access to a sidewalk in the middle of the Highway 92 on-ramp. But, the journey’s not over yet; there is still an unbearably steep 350 yards back up West Hillsdale Boulevard, where one would finally be able to catch the SamTrans bus. Needless to say, this is not only impossible, it is unacceptable.
Our findings prompted us to contact the City of San Mateo immediately. We advocated that they do something to remediate the multitude of access and safety issues at this intersection. We spoke to a senior engineer at the Department of Public Works, and our advocacy paid off. Within 10 days, the city installed curb ramps on all four sides of the intersection.
This is just one of the many success stories at CID. Do you have a CID success story that you would like to share here on our Blog and social media outlets? Perhaps we installed a ramp or a stairlift for you at your home and you would like to let others know how it has helped you to remain independent and in the community? Maybe we helped you to become a better advocate for yourself, and you would like to tell that story? We’re looking for more of these types of success stories, so if you are interested in sharing your story, you can reach out to us HERE.
When Garcia went to accompany his girlfriend to the eye doctor, he said he was asked to leave, unable to sit in the waiting room.
Garcia said he wants an apology from the eye doctor, George Alexandrakis.
"I would be unable to sit in the car with my dog, especially since it was over 100 degrees that day," Garcia said. "And, I wasn't about to do that, because he's an extension of myself ... I would just like for them to be more sensitive to the law."
Garcia said generally people are pretty understanding about his disability, and now he just expects the same thing, especially from an eye doctor.
"It was a bit frustrating," he said. "It did get me a little PO'd. But, I got over it."
The couple contacted the Department of Justice and the Independent Living Center of Kern County, where officials heard the story and agreed with them.
"George is a really good advocate for himself," said Olivia Kent of the ILC. "And, I think he's on the right path of educating the community one by one on, people who want to deny him services."
Garcia's girlfriend doesn't want to leave her eye doctor. He's done multiple surgeries on her, and she thinks he does a great job.
Eyewitness News received a statement from Alexandrakis, stating that no patients were denied services. He wrote that some particular breeds of animals create an allergic reaction on himself, which could affect his work, and his primary objective is the well-being of his patients.
“I always wanted to become an advocate. I love teaching people how to advocate for themselves – and now I am doing it! ” says Marianne Haas, the new Independent Living Advocate for the Center for Independence of Individuals with Disabilities in San Mateo County.
Marianne emigrated from Switzerland 33 years ago and studied special education at Columbia University, graduating with a degree in special ed in 1987. After graduation, she launched a long career as a special ed teacher. “As a teacher,” she notes, “I was always attracted to advocating for students and parents in the school system.” She decided to pursue her passion for advocacy and enrolled in the LightHouse for the Blind’s Employment Immersion Program to explore new career paths and hone her job search skills. She learned practical skills, like “how to do informational interviews, build a strong resume and handle telephone interviews. I like to just be myself in interviews. In the Employment Immersion Program, I learned some tips on how to be myself and present myself in the best way possible. I think the most important thing I learned is to keep moving forward despite difficulty. Just keep at it, don’t give up!”
When the Independent Living Advocate position came up in her job search, Marianne recognized it could be the perfect job for her. Marianne already knew she had a strong interest in advocacy work. Since she was born with almost no vision, she also had lifelong personal experience of living with a disability, as well as abundant experience working with students with disabilities. She thought the combination made her a great fit for the job. Employment Immersion Program Coordinator Justine Harris-Richburgh agreed. “Marianne is one of those personalities that you do not meet every day, but remember forever. Her attitude, drive and pure passion for what’s right could not be a more perfect fit in the role of an advocate. She does not back down from fighting for what she believes in, and that is something I really respect in her. I believe she will go very far in her career as an advocate because she is a person who strives for results and solutions, is not afraid to face challenges and really just wants to be a person people can depend on when help is needed. I am very proud of her and her drive to meet her personal goals no matter setbacks.”
The Center for Independence of Individuals with Disabilities hiring committee thought she was a good fit too: She was hired after two interviews, where she got to practice her new interviewing skills learned at the LightHouse.
Marianne is blossoming in her new position. “I just love helping people find the right resources for them, whether it’s finding housing, applying for social security or accessing peer counseling. I am still learning about all the local resources available. I think my best moment on my new job was when one of my clients said, ‘You may not have found the right resources for me yet, but you have given me hope.’ That made me feel so good, because there is always hope – don’t give up!”
Our next session starts September 23rd, 2014. For more information or to sign-up, contact Justine Harris-Richburgh at 415-694-7366 or firstname.lastname@example.org or Kate Williams at 415-694-7324 or email@example.com.
OP-ED: Rethinking the term disability June 24, 2014, 05:00 AM By Vincent Merola
This past weekend, the College of San Mateo was incredibly fortunate to have hosted the 2014 U.S. Paralympics Track and Field National Championships. World-class athletes from all over the country were able to take in the wonderful views up at 1700 W. Hillsdale Blvd. and to compete on the college’s iconic blue track. Watching these athletes perform made me think about how it is we define ability and disability. Working at a disabilities nonprofit, I’m quite familiar with and sensitive to “person first terminology.”
Person first terminology is a common form of communication among the disability and culturally competent communities. Here, as the phrase suggests, we put the person before the assumed status. For example, we could identify someone as having a disability; not being disabled. Instead of saying “Brian is schizophrenic,” we would say, “Brian is a person with schizophrenia.” With person first terminology, we are not limiting someone’s identity to a single status; we are identifying only one component of their whole self. As a person, Brian may like hiking, going to the movies, reading and hanging out with friends. All of these activities contribute to what it is that makes Brian who he is. When we say “Brian is schizophrenic,” we are limiting him to only that one aspect of his total identity.
There is also another equally sensitive and equally important school of thought that actually embraces the disability identity. Here, people don’t see their disabilities as barriers. Rather, it’s the barriers that society creates that limits equal access for everyone. Some of the barriers that people using wheelchairs have are potted sidewalks, limited accessible housing and limited accessible transportation. These are societal barriers, not personal ones, which is why some people identify as being disabled — disabled due to the barriers of society. There is merit to both schools of thought. Ultimately, I feel that the best way to identify someone is to ask them how they would like to be identified. However, I am curious about the meaning of disability. Disability, by definition, can also mean the inability to do something. With societal barriers removed, we are all capable of doing anything. The human race is the most adaptive species in the animal kingdom. Our universal ability to problem-solve and reason is what separates us from all other species. We all have different and adaptive ways of approaching life. In that regard, there are no disabilities, only different abilities.
The U.S. Paralympics National Championships at CSM really exemplified this way of thinking. During this weekend’s events, visual-impairment was not a barrier for reigning world champion Lex Gillette when he took home the gold for the long jump. Despite spinal bifida’s deteriorative effects on her spine, Tatyana McFadden, who uses a wheelchair, won gold in the women’s 100 meters. In April, she won the women’s wheelchair race at the Boston Marathon for the second time. One would have been hard-pressed to see any disabilities at CSM this weekend. Witnessing the abilities of all the athletes was truly awe-inspiring.
Vincent Merola is the systems change coordinator at the Center for Independence of Individuals with Disabilities — an Independent Living Center located in San Mateo, California.
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