Letter to the candidates
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| Also listed in: Americans with Disabilities for Richardson |
Dear Governor Richardson: I have written the following letter to you and to the other Democratic candidates, some by post, some by email, and I have not recieved a single answer to any of my concerns, except for universal healthcare. I realize that answering a letter or an email does not pack the same punch as a photo opportunity, but I promise you that if you can respond to my questions about disability issues with a clear, cohesive plan to address those issues and you come to the San Francisco Bay Area, I will show up and pose for any photo you'd like. I will also write letters to editors and tell everyone who I meet that you are the candidate who proved to me that the Democratic Party cares about each and every American, not just those who can afford to buy support. I may even volunteer for your campaign.
Please answer me.
If you become President, how will you help Americans with disabilities?
Until my improperly fitted motorized wheelchair caused me so much pain that I had to stop working, I was a social worker at the LightHouse for the Blind and Visually Impaired in San Francisco. All of my clients had some form of vision loss, and many were under the age of fifty. Some were born with their vision losses, while others have acquired them. The issues that concern me are those that face young Americans with disabilities.
As a young American who uses a wheelchair, these issues affect me. These issues affect you, too; issues which affect one group of Americans affect us all. According to the U.S. Census, in 2002, people with disabilities 16 years old and older had a 13.7 percent unemployment rate. Their non-disabled counterparts had an unemployment rate of 6.7 percent. Consequently, people with disabilities in 2002 tended to be poorer than non-disabled Americans. 21.1 percent of disabled Americans lived below the poverty level, as opposed to 11.1 percent of non-disabled Americans.
The poverty and unemployment that Americans with disabilities face has many causes. One is low expectations. No one expects people with disabilities to succeed in life, so they don't even try. Last year, I went to a special education classroom in a local high school. The students sat around listening to music and completely ignored the teacher, who eventually gave up trying to interact with them altogether. These kids were probably going to become another statistic.
In 2002, 13.9 percent of Americans with disabilities had graduated college, compared to 21.8 percent of the national average.. What they didn't see is that college degrees are especially important for people with disabilities because living with a disability is expensive. My new motorized wheelchair cost $10,000.
Fortunately, I had a job with good insurance coverage, so I only had to pay $2000 for it, which is more than most people with disabilities have, especially if they receive Supplemental Security Income (SSI). As you know, the requirements for SSI are that recipients have no more than $2000 in liquid assets. Liquid assets include IRAs, 401(k)s, Health Savings Accounts, the face value of life insurance policies, as well as spouses' assets. Had I been on SSI, I would have been unable to afford my wheelchair, since Medicaid would not cover a chair with all of the features that I need to function in society. Without my custom-built wheelchair, my disability would prevent me from maintaining employment. I am not alone in my need for expensive treatments for my disability.
Many other Americans with disabilities cannot work because they are unable to get the treatment they need through Medicaid or Medicare and are unable to afford to pay for it on their own. Medicaid is a huge help for the people who qualify for it, but it doesn't help enough. Many people with disabilities require help with tasks of daily living, such as cooking, cleaning, bathing and dressing. Personal assistants help people with disabilities continue to live independently in their communities. Medicaid covers the cost of a personal assistant for a certain number of hours per week, depending on the disabled person's needs. The problem is that personal assistants are not paid fairly at all. Personal assistants in California make just $10 per hour and receive no health benefits. The situation is similar across the country. In contrast, Wal-Mart pays its employees an average of $11 per hour. The comparatively low wages and physically demanding work are reasons why personal assistants are so hard to find nationwide. Without personal assistants, the people who require their services must reside in nursing homes instead of in the community, where they belong.
The expense of living with a disability is compounded by the fact that many people with disabilities cannot take low-paying jobs simply to make ends meet. In my case, I cannot be a waitress. I have neither the coordination, the balance, nor the strength required to lift heavy trays through narrow spaces to tables. Other people with disabilities have other limitations in the type of work that they can do, but the end result is the same: sectors of employment that are open to the rest of the population are closed to us. We need employment and employers that will accommodate our disabilities. The Americans with Disabilities Act (ADA) of 1990 was written to ensure that, among other things, employers make what is known as "reasonable accommodations" to their employees with disabilities. A reasonable accommodation is an adjustment to the employee's work situation that does not change the "essential functions" of the job. An essential function is the fundamental nature of the job. As I stated above, I could not be a waitress because waitresses need to balance food on trays. Social workers, on the other hand, do not need to do home visits. It is customary for them to do so, but a reasonable accommodation that an agency could make is to give the social worker who can't drive a caseload that is centered in the agency and divide the home visits among the other social workers who work there.
Unfortunately, since its signing in 1990, the ADA has been steadily weakened. In 2004, the Supreme Court heard the case of Tennessee v. Lane. In this case, Lane, who used a wheelchair, was arrested for failing to appear in court in Tennessee because he refused to crawl or be carried up the courthouse steps. Many disability civil rights organizations, such as the National Coalition for Disability Rights and the Bazelon Center for Mental Health Law, feared that if the court ruled against Lane, the ADA would be declared unconstitutional. Fortunately, the Court ruled in favor of Lane, but the idea that the ADA's constitutionality should even be in question is an outrage. To my knowledge, no one has ever sought a ruling on the constitutionality of the Civil Rights Act of 1964.
Are Americans with disabilities less valuable to our society than other Americans? Are we less worthy of the civil rights and protections afforded to the rest of the population? Obviously, we are not, but frivolous lawsuits and misunderstandings about what disability is and what the ADA means causes people to believe that those of us with disabilities are inherently worth less than other Americans. There is a widespread misperception that the ADA and the government funding that some people with disabilities receive means that we're somehow getting a "free ride".
Nothing could be further from the truth. Programs like SSI and Social Security Disability Insurance (SSDI) are necessary programs for people whose disabilities are so severe that they cannot work, and they require stringent proof of the applicant's inability to work. Getting government benefits is a long, hard process that can take up to two years to complete. Most people with disabilities would rather not be on SSI or SSDI because they would rather not have to worry about losing their benefits. However, the process for getting off of either of these programs is so confusing that many people are afraid to take the steps to become employed for fear that they will lose the benefits that they have waited so long to receive. The Social Security Administration runs two to three months behind, so when people return to work, they often continue receiving checks that they shouldn't be getting. When the Social Security Administration realizes this, it sends the people letters stating that the people owe the government money and threatening legal action if they fail to pay. People with disabilities often do not have the money to pay the government back, and while I have never seen anyone get taken to court over overpayments, the fear is there. So people with disabilities who should be able to work and get themselves out of poverty don't, because they're afraid of losing everything.
What people with disabilities need is someone who is willing to hear about our problems and help us solve them. We need better education systems with teachers who are committed to instilling in their students not only the viability of a college education, but the absolute need for it. We need to have our civil rights protected, not questioned. We need affordable healthcare so that medical devices and treatments that allow people with disabilities to work aren't out of reach. We need better pay and benefits for personal assistants, who make our successful participation in society possible. We need employers who are willing to hire people with disabilities. We need Social Security rules that are easier to understand so that people can accept those jobs.
As a Democrat, your voice should be a strong one for people who are unable to make their voices heard. Please add your voice to the voices of 49.7 million people with disabilities whose voices go unheard. If you would like more information about the issues I've described here, please don't hesitate to contact me.
I'll help you in any way I can.
Sincerely,
Susan Levitt Waxman, MSW
Please answer me.
If you become President, how will you help Americans with disabilities?
Until my improperly fitted motorized wheelchair caused me so much pain that I had to stop working, I was a social worker at the LightHouse for the Blind and Visually Impaired in San Francisco. All of my clients had some form of vision loss, and many were under the age of fifty. Some were born with their vision losses, while others have acquired them. The issues that concern me are those that face young Americans with disabilities.
As a young American who uses a wheelchair, these issues affect me. These issues affect you, too; issues which affect one group of Americans affect us all. According to the U.S. Census, in 2002, people with disabilities 16 years old and older had a 13.7 percent unemployment rate. Their non-disabled counterparts had an unemployment rate of 6.7 percent. Consequently, people with disabilities in 2002 tended to be poorer than non-disabled Americans. 21.1 percent of disabled Americans lived below the poverty level, as opposed to 11.1 percent of non-disabled Americans.
The poverty and unemployment that Americans with disabilities face has many causes. One is low expectations. No one expects people with disabilities to succeed in life, so they don't even try. Last year, I went to a special education classroom in a local high school. The students sat around listening to music and completely ignored the teacher, who eventually gave up trying to interact with them altogether. These kids were probably going to become another statistic.
In 2002, 13.9 percent of Americans with disabilities had graduated college, compared to 21.8 percent of the national average.. What they didn't see is that college degrees are especially important for people with disabilities because living with a disability is expensive. My new motorized wheelchair cost $10,000.
Fortunately, I had a job with good insurance coverage, so I only had to pay $2000 for it, which is more than most people with disabilities have, especially if they receive Supplemental Security Income (SSI). As you know, the requirements for SSI are that recipients have no more than $2000 in liquid assets. Liquid assets include IRAs, 401(k)s, Health Savings Accounts, the face value of life insurance policies, as well as spouses' assets. Had I been on SSI, I would have been unable to afford my wheelchair, since Medicaid would not cover a chair with all of the features that I need to function in society. Without my custom-built wheelchair, my disability would prevent me from maintaining employment. I am not alone in my need for expensive treatments for my disability.
Many other Americans with disabilities cannot work because they are unable to get the treatment they need through Medicaid or Medicare and are unable to afford to pay for it on their own. Medicaid is a huge help for the people who qualify for it, but it doesn't help enough. Many people with disabilities require help with tasks of daily living, such as cooking, cleaning, bathing and dressing. Personal assistants help people with disabilities continue to live independently in their communities. Medicaid covers the cost of a personal assistant for a certain number of hours per week, depending on the disabled person's needs. The problem is that personal assistants are not paid fairly at all. Personal assistants in California make just $10 per hour and receive no health benefits. The situation is similar across the country. In contrast, Wal-Mart pays its employees an average of $11 per hour. The comparatively low wages and physically demanding work are reasons why personal assistants are so hard to find nationwide. Without personal assistants, the people who require their services must reside in nursing homes instead of in the community, where they belong.
The expense of living with a disability is compounded by the fact that many people with disabilities cannot take low-paying jobs simply to make ends meet. In my case, I cannot be a waitress. I have neither the coordination, the balance, nor the strength required to lift heavy trays through narrow spaces to tables. Other people with disabilities have other limitations in the type of work that they can do, but the end result is the same: sectors of employment that are open to the rest of the population are closed to us. We need employment and employers that will accommodate our disabilities. The Americans with Disabilities Act (ADA) of 1990 was written to ensure that, among other things, employers make what is known as "reasonable accommodations" to their employees with disabilities. A reasonable accommodation is an adjustment to the employee's work situation that does not change the "essential functions" of the job. An essential function is the fundamental nature of the job. As I stated above, I could not be a waitress because waitresses need to balance food on trays. Social workers, on the other hand, do not need to do home visits. It is customary for them to do so, but a reasonable accommodation that an agency could make is to give the social worker who can't drive a caseload that is centered in the agency and divide the home visits among the other social workers who work there.
Unfortunately, since its signing in 1990, the ADA has been steadily weakened. In 2004, the Supreme Court heard the case of Tennessee v. Lane. In this case, Lane, who used a wheelchair, was arrested for failing to appear in court in Tennessee because he refused to crawl or be carried up the courthouse steps. Many disability civil rights organizations, such as the National Coalition for Disability Rights and the Bazelon Center for Mental Health Law, feared that if the court ruled against Lane, the ADA would be declared unconstitutional. Fortunately, the Court ruled in favor of Lane, but the idea that the ADA's constitutionality should even be in question is an outrage. To my knowledge, no one has ever sought a ruling on the constitutionality of the Civil Rights Act of 1964.
Are Americans with disabilities less valuable to our society than other Americans? Are we less worthy of the civil rights and protections afforded to the rest of the population? Obviously, we are not, but frivolous lawsuits and misunderstandings about what disability is and what the ADA means causes people to believe that those of us with disabilities are inherently worth less than other Americans. There is a widespread misperception that the ADA and the government funding that some people with disabilities receive means that we're somehow getting a "free ride".
Nothing could be further from the truth. Programs like SSI and Social Security Disability Insurance (SSDI) are necessary programs for people whose disabilities are so severe that they cannot work, and they require stringent proof of the applicant's inability to work. Getting government benefits is a long, hard process that can take up to two years to complete. Most people with disabilities would rather not be on SSI or SSDI because they would rather not have to worry about losing their benefits. However, the process for getting off of either of these programs is so confusing that many people are afraid to take the steps to become employed for fear that they will lose the benefits that they have waited so long to receive. The Social Security Administration runs two to three months behind, so when people return to work, they often continue receiving checks that they shouldn't be getting. When the Social Security Administration realizes this, it sends the people letters stating that the people owe the government money and threatening legal action if they fail to pay. People with disabilities often do not have the money to pay the government back, and while I have never seen anyone get taken to court over overpayments, the fear is there. So people with disabilities who should be able to work and get themselves out of poverty don't, because they're afraid of losing everything.
What people with disabilities need is someone who is willing to hear about our problems and help us solve them. We need better education systems with teachers who are committed to instilling in their students not only the viability of a college education, but the absolute need for it. We need to have our civil rights protected, not questioned. We need affordable healthcare so that medical devices and treatments that allow people with disabilities to work aren't out of reach. We need better pay and benefits for personal assistants, who make our successful participation in society possible. We need employers who are willing to hire people with disabilities. We need Social Security rules that are easier to understand so that people can accept those jobs.
As a Democrat, your voice should be a strong one for people who are unable to make their voices heard. Please add your voice to the voices of 49.7 million people with disabilities whose voices go unheard. If you would like more information about the issues I've described here, please don't hesitate to contact me.
I'll help you in any way I can.
Sincerely,
Susan Levitt Waxman, MSW
