Nearly 20 percent of military service members who have returned from Iraq and Afghanistan — 300,000 in all — report symptoms of post traumatic stress disorder or major depression, yet only slightly more than half have sought treatment, according to a new RAND Corporation study.
Back last year the United Nations acting on resolution by State of Qatar designated today (April 2nd) as the first of annual World Autism Awareness Day. The resolution further encouraged "all Member States of the United Nations to take measures to raise awareness about autism throughout society"..
Following through on the challenge, Autism Speaks, a national in the US, has a Virtual Walk Celebrating World Autism Awareness Day to help raise money for research and awareness for autism spectrum disorders.
As part of a month long autism awareness campaign the CDC has updated its The Learn the Signs. Act Early website to help people to get involved.
The National PASS Network encourages advocates and organizations to support individuals with autism and pass the information along to heighten awareness about a disorder affecting millions of individuals and families around the world.
Bob Woodruff of ABC News has an interesting article recently, How the Military Has Repaid Iraq Vets With Permanent Disabilities. Why Soldiers With Traumatic Brain Injuries and Permanent Handicaps Are Considered Partially Disabled. The article, part of a series by Woodruff, is about how Americans are treating it's returning heroes who have traumatic brain injuries(TBI). It's estimated that 10-15% of Iraq GI's will returning to an ungrateful nation with serious TBI injuries they will have to live with the rest of their lives
According to Woodruff's article, veterans looking to the VA for disability compensation and assistance often have to prove they were exposed to blasts and have to follow an endless paper trail to substantiate injuries and medical records. The problem is that their injuries are such that they cannot pursue this endless runaround that would be difficult even for someone without injuries. The bottom line is with no one to provide assistance to these disabled veterans there is no help forthcoming. I'm also reminded of the neglect of Iraq veterans with a troubling statistic I saw from the DoD several months back noting that although more than 3 out of 10 soldiers met the criteria for a “mental disorder”, fewer than half of them received help.
It's a crying shame. We will wonder as a nation why the costs will pop up in other areas in the coming years. Look for our nation's homeless shelters to do a booming business serving unserved veterans. As a Vietnam Vet, I am reminded of the song Deja Vu All Over Again.
On March 11, Senator Chris Dodd (D-CT), senior member of the Senate Committee on Health, Education, Labor and Pensions and Chairman of its Subcommittee on Children and Families, announced the introduction of the Disabilities Savings Act of 2008 at an event with Autism Speaks Co-Founders Bob and Suzanne Wright, Stuart Spielman, the father of a teenage son with Autism, Kathy Neas of Easter Seals, and families of children with autism and other disabilities.
The legislation is a significant move to help families for their children with lifelong disabilities. Senator Dodd notes that the legislation "provides families with an important tool to save the money they need for their unique needs and provide for their children long after they are gone.”
This legislation has a long way to go in a year filled with election politics, but this has a good chance of passage. What this does is removes the administration of support programs that help children with lifelong disabilities from the Social Security Administration. Currently such support is only available to families who can afford legal help to develop and administer what is called a Special Needs Trust. Moreover, Senator Dodd's DSA proposes to allow for job supports such as "employment training and support, transportation, and other related services". Such a move would make the use of the Social Security work incentives which are poorly administered by SSA less used. Access now is such a hassle that families don't use them when they are needed.
Below is a description of the program from Senator Dodd's office:
Disability Savings Act of 2008
Purpose:
To encourage individuals with disabilities and their families to save private funds for disability-related expenses to supplement, not supplant, benefits provided by other sources (including Medicaid and private insurance) so that people with disabilities can maintain health, independence, and quality of life.
Overview:
This legislation encourages individuals with disabilities and their families to save personal funds for their unique disability-related needs in Disability Savings Accounts (DSAs). The establishment of DSAs will promote the investment of private funds in the long-term well-being of individuals with disabilities through tax-advantaged savings tools, including a refundable tax credit for low-income savers, while protecting the beneficiary’s access to critical public supports.
Specifics:
DSAs will provide a tax-advantaged mechanism for individuals with disabilities to save money.
* Funds expended from the DSA for specific services such as education, medical services, employment training and support, transportation, and other related services will be tax-free.
* Interest on accounts with a balance of $250,000 or less is tax free.
* Low income earners will receive a refundable matching tax credit of up to $1000 for their contributions to the DSA.
* Funds from college savings plans and special needs trusts for the same beneficiary can be rolled into the DSA without penalty.
Beneficiaries of the account must be determined to be blind or disabled by the Social Security Administration or the Disability Determination Service of a state and be under the age of 65. The account can be held and managed by the beneficiary, their spouse or family member, or a legal guardian through a financial institution. The DSAs are designed to be easier to manage and set up than current savings mechanisms, which often require the expensive services of an attorney. Beneficiaries or their representative can expend funds directly from the account for services. Assets held in the fund will not be counted against eligibility for Medicaid and SSI or other federal support services.
Most Americans do not know the risks and warning signs of diseases that could blind them if they don't seek timely detection and treatment, according to recent findings of the "Survey of Public Knowledge, Attitudes, and Practices Related to Eye Health and Disease".
Seventy-one percent of respondents reported that a loss of their eyesight would rate as a 10 on a scale of 1 to 10, meaning that it would have the greatest impact on their day-to-day life. However, only eight percent knew that there are no early warning signs of glaucoma, a condition that can damage the eye's optic nerve and result in vision loss and blindness.
Fifty-one percent said that they have heard that people with diabetes are at increased risk of developing eye disease, but only 11 percent knew that there are usually no early warning signs. Only 16 percent had ever heard the term "low vision," which affects millions of Americans. Low vision is vision loss that standard eyeglasses, contact lenses, medicine, or surgery cannot correct, making everyday tasks difficult to do. Simple tasks like reading the mail, watching TV, shopping, cooking, and writing become challenging.
Hispanic respondents reported the lowest access to eye health information, knew the least about eye health, and were the least likely to have their eyes examined among all racial/ethnic groups participating in the survey. Forty-one percent of Hispanics reported that they had not seen or heard anything about eye health or disease in the last year, compared with 28 percent of Asians, 26 percent of African-Americans, and 16 percent of Caucasians.
The U.S. Equal Employment Opportunity Commission (EEOC) has issued two new question-and-answer guides for providing technical assistance for employers and veterans on workplace issues affecting veterans with service-connected disabilities.
The new guide for employers explains how protections for veterans with service-connected disabilities differ under the Americans with Disabilities Act (ADA) and the Uniformed Services Employment and Reemployment Rights Act (USERRA). The document further describes how the ADA in particular applies to recruiting, hiring, and accommodating veterans with service-connected disabilities. The EEOC enforces Title I of the ADA, which prohibits employment discrimination against people with disabilities in the private sector and state and local governments. The U.S. Department of Labor enforces USERRA, which applies to the reemployment of veterans with and without service-connected disabilities.
The second publication answers questions that veterans with service-connected disabilities may have about the protections they are entitled to when they seek to return to their former jobs or look to find their first, or new, civilian jobs. The document also explains changes or adjustments that veterans may need, because of their injuries, to apply for, or perform, a job, or to enjoy equal access to the workplace.
NPN is proud to support our friends at The Mental Health Project of the Urban Justice Center with their Fifth Annual SoHo Art Auction on Wednesday, March12, 2008, from 6-9 p.m. at Poltrona Frau, 145 Wooster Street (between Princeand Houston). All proceeds will support the Mental Health Project's advocacy for low-income and homeless New Yorkers with mental illness.
The Mental Health Project helps low-income New Yorkers with psychiatric disabilities break the devastating cycle of homelessness, hospitalization and incarceration and regain stability and independence.To find the people who need them most, The Mental Health Project goes to jails, psychiatric units,and shelters. They focus on essentials such as food, housing, medical care, and disability benefits. They work to discover gaps in the safety net and educate.organize, and litigate to close them.
Contributing artists include Richard Serra, Nan Goldin, Anders Goldfarb, Dina Bursztyn, Eric Pelka, Christopher Colvin, Kate Temple, Michael Lorenzini, Kate Temple, Laura Lienhard, and many more.
Preview Art and Bid Online You know you don't have to be a New Yorker to bid on this art work.
Learn about NPN's similar project with our ArtWorks : Creative Industries Project where we are exploring ahead-of-the-curve business creation for artists with disabilities with new concepts in microloan funding and creative and sustaining use of the Social Security work incentives to fund self-employment for artists with disabilities. We are learning that art can offer significant opportunity for self-support for people with disabilities.
As part of U.S. Health and Human Services (HHS) Secretary Mike Leavitt's focus on prevention, HHS Assistant Secretary for Aging Josefina G. Carbonell has announced participation in a demonstration designed to help seniors stay healthy. Nine Aging and Disability Resource Center (ADRC) programs and an Administration on Aging (AoA) Older Americans Act Information and Referral (I&R) program will participate in the Medicare Senior Risk Reduction Demonstration.
The CMS Medicare Senior Risk Reduction Demonstration is designed to evaluate whether health promotion and disease prevention programs currently offered by national private insurers and employers can be delivered by the Medicare program to encourage beneficiaries to engage in healthy lifestyles and practices that can help them maintain and improve their health and reduce the need for health care services for preventable illnesses, injuries, or complications.
The U.S. Administration on Aging has informed the National PASS Network of its publication of the HHS Strategic Plan FY 2007-2012. This document provides a comprehensive overview of the U.S. Department of Health & Human Service's priorities and activities for the next five years, and highlights the significant role the U.S. Administration on Aging is playing within the department to improve the health and well-being of older people and their family caregivers.
The U.S. Department of Health and Human Services has told NPN this morning that the agency has released a new health literacy tool for people who serve older adults. The Quick Guide to Health Literacy and Older Adults is designed to provide useful strategies and suggestions to professionals who work with older adults to help bridge the communication gap between professionals and older adults.
In a national assessment of health literacy, only three percent of the older adults surveyed were found to be proficient in health literacy. Persons with limited health literacy have more adverse health outcomes including less frequent use of preventive services, higher hospitalization rates, and more emergency room visits. For older Americans, difficulties with health literacy can complicate already challenging health problems since as many as 80 percent of older Americans have at least one chronic disease.
20% of Americans cannot afford health care, according to a report by the Centers for Disease Control and Prevention
HHS Secretary Mike Leavitt announced on Tuesday (November 26) the members appointed to the Department of Health and Human Services' new Interagency Autism Coordinating Committee. This committee coordinates efforts within the department to combat autism spectrum disorder through research, screening, intervention, and education. Secretary Leavitt says the committee will facilitate the efficient and effective exchange of information on autism activities among member agencies, and coordinate autism-related programs and initiatives. NPN is glad to see the federal goverment and Secretary Leavitt moving ahead on this important work to help families of children struggling with Autism.
"This important committee will play a key role in coordinating autism research, services, and education related to autism spectrum disorder," Secretary Leavitt said. "I'm pleased that its members bring to the committee a wide range and great depth of expertise, including research and program administration, advocacy and personal experience with the condition."
Authorized under the Combating Autism Act of 2006, the Interagency Autism Coordinating Committee advises the HHS Secretary and the Director of the National Institutes of Health (NIH). Secretary Leavitt delegated the authority to establish the committee to the NIH, which designated its National Institute of Mental Health (NIMH) to lead this activity.
The committee chair is Thomas R. Insel, M.D., director of NIMH who noted "The committee's first priority will be to develop a strategic plan for autism research that can guide public and private investments to make the greatest difference for families struggling with autism,"
HHS is active in fostering research and making the results available to aid people with autism. Among the activities:
• NIH funding and expertise support the Autism Centers of Excellence program, which the agency launched after the Combating Autism Act was passed, to seek the causes of autism and new treatments for the disorder.
• The Centers for Disease Control and Prevention (CDC) supports a multi-state collaborative study to help identify factors that put children at risk for autism spectrum disorders (ASDs) and other developmental disabilities. The five-year study, called SEED (Study to Explore Early Development), is currently enrolling participants.
CDC has reported findings from the first and largest summary of autism prevalence data from multiple U.S. communities. These findings, which found autism spectrum disorders in approximately one in 150 children in these communities, was reported by the Autism and Development Disabilities Monitoring Network, which was designed to provide more consistent and reliable estimates.
For additional info on the Interagency Autism Coordinating Committee and notices and activities of upcoming meetings go to this website.
Last week, just in time for Veterans Day, came the news about how our country is really doing when it comes to honoring our veterans. According to a report from the National Alliance to End Homelessness in Washington DC, veterans make up 11% of the adult population but they make up over 25% of the homeless population.
It's not like us old Vets didn't see it coming. On these pages as far back as Christmas, 2004, NPN has been commenting on what we are doing to vets (check our Veterans Issues page out). I'm not clairvoyant, it just as a Vietnam veteran I have seen this happen to many times before. You just kind of shake your head in disbelief and wonder what President Bush and the Congress are thinking. Looks like there are some things we just never learn as a country.
Homelessness is a symptom of a system failure. In the case of military veterans, the failing system is the VA and the so called veteran's readjustment programs. The system is broken; has been for several decades. The job programs really don't really work and never have. The veteran's preference for employment that are really not preferences at all but a vehicles for discrimination (if organizations actively work to get around the preferences, it's discrimination).
The way the Iraq War is being fought will virtually insure that many vets will have to deal with mental illness, post-traumatic stress disorders or traumatic brain injuries. You know that's a lifetime challenge. American politicians are famous for talking about what they are gonna do, but short on what they really do. In the end the ones who are really pay is the vets. Many disabled vets will pay the individual costs of war all their life. When you don't have a job, no promising prospect of getting one and you have no place to live and no place eat in but the soup kitchens, we have a word for it in the US: homeless. Kind of not what we expected when the US Army told us to "be all you can be". It's a national disgrace.
The 2008 Mobility Planning Services (MPS) Institute will take place from April 21-24, 2008 in Washington, D.C. MPS brings together teams of leaders from the disability community and transportation industry to share information and strategies to improve access to transportation services in their communities. Registration deadline is December 21, 2007. Registration materials.
Law for Hunting Fugitives is Stripping Survival Funds from Elderly, Poor and Disabled
Today NPN received a report from the Mental Health Project of the Urban Justice Center critical of the Social Security Administration for terminating the benefits of thousands of elderly, disabled, and poor Americans under the pretext of law enforcement. Thanks Bill.
In a new report entitled Social Insecurity; How the Social Security Administration's "Fugitive Felon Program" Harms Disabled, Retired and Poor Americans Without Aiding Law Enforcement, the Mental Health Project (MHP) finds that the Fugitive Felon Program ("FFP"), which is supposed to help police arrest wanted fugitives, is having the perverse effect of leaving thousands of retired and disabled people destitute and desperate.
Under the FFP, the Social Security Administration suspends the benefits of people who appear to have outstanding felony warrants or probation or parole violations, based on a crude computer match.
“This misguided policy is only making our neediest citizens more vulnerable” said Bill Lienhard, Director of the Mental Health Project at the Urban Justice Center and an author of the report. “It is clear that the Social Security Administration is denying benefits to people who are not wanted by the police and who aren’t running from the law. By stripping them of subsistence benefits – that cover medicine, food and rent – the government is throwing their lives into a tailspin,” he stated.
Social Insecurity finds that the Fugitive Felon Program often suspends benefits of individuals whom the police have no interest in arresting. Since the program began in 1996, SSA has identified over 300,000 “fugitives” who were receiving benefits – but only 13.6% have been arrested.
“Law enforcement officials seek out and arrest only a handful of the individuals receiving SSI, disability, or retirement benefits who have outstanding warrants,” said Jennifer J. Parish, Director of Criminal Justice Advocacy in the Mental Health Project. “The other 260,000 recipients lose their benefits after law enforcement decides not to apprehend them. This policy has done nothing to make our streets safer. It has only had drastic effects on destitute and elderly individuals,” she stated.
The Social Security Administration also suspends the benefits of people who have no outstanding violations due to a severely flawed database matching system. SSA often suspends an individual’s benefits if the identifying information in warrants only loosely matches their own records.
In one instance, a New York City resident was named the subject of outstanding warrants in Massachusetts until his lawyers determined that the person named was a woman with a different Social Security number. Separately, a woman in Nevada had her retirement benefits suspended on a 34-year-old warrant – that was intended for a man living in New York City.
The biggest victims of the FFP are recipients with severe mental illness. In one study, nearly 60% of the recipients whose benefits were suspended suffered from severe mental disabilities, including mental retardation and schizophrenia.
“It is virtually impossible to regain these benefits once they are stopped,” said Lienhard. “For many poor, elderly and disabled people, becoming ensnared in the federal government’s fugitive felony program is devastating. The bureaucratic obstacles to reclaiming benefits are virtually impossible to overcome,” he stated.
In December 2005, in the case of Fowlkes v. Adamec, the United States Court of Appeals for the Second Circuit held that SSA’s suspension of benefits on the basis of a felony warrant, without any inquiry as to whether the recipient was actually “fleeing” prosecution or incarceration, was illegal. Following the Fowlkes decision, SSA announced that it would stop suspending or denying benefits on the basis of an outstanding felony warrant in New York, Vermont, and Connecticut – yet the majority of the country is still subject to its policy.
In light of the continuing impacts SSA’s policy is having across the country, the Urban Justice Center’s report recommends:
• The Social Security Administration should apply the Appeals Court ruling to the entire country and suspend benefits only if people are actually fleeing from justice;
• The Social Security Administration should refine its data-matching system to guard against mistakes and identity theft;
• The Social Security Administration should help people obtain information about alleged warrants and violations.
Here is a copy of the full report.
Acting Secretary of Veterans Affairs Gordon H. Mansfield announced today the Department of Veterans Affairs (VA) will convene a "consensus conference" with the Department of Defense and the National Institutes of Health to improve the designs and methodologies all three agencies will use in future research studies regarding Post-Traumatic Stress Disorder (PTSD). The date/ location of the conference has not been confirmed.
SSA announced on Wednesday, October 17 that the Cost-of-Living Adjustment (COLA) increases for next year will increase Social Security and SSI benefit programs by 2.3 percent. In 2008, the average SSDI monthly check for a worker who is disabled will be $1004, up from $981 in 2007. The Federal Benefit Rate (FBR) for Supplemental Security Income (SSI) will rise next year to $637 a month for an individual, from $623, and to $956 for a couple from $934.
Several work-incentive related provisions are also indexed to the CPI that is the basis for federal COLA adjustments and will rise. The "SGA level" that indicates so-called "substantial work" earnings has been raised to $940 per month. People who are disabled because of blindness have a higher threshold of $1,570 in 2008.
The amount of earned income that indicates a trail-work-period "service month" is up in the coming year to $670. The trial-work period is 9 "service months" spread over a 5-year period and permits an individual to test their ability to work without losing SSDI benefits.
Students with disabilities on SSI will now be able to deduct significant earnings under the Student Earned Income Exclusion, excluding the first $1,550 of earned income in a month up to $6,240 in 2008 when they work.
Fact sheet is available from SSA
© Daniel Scarborough, 2007
The Administration on Aging (AoA) recently posted on its web site an Excel Workbook with the 2006 population estimates for the older population of each county in the US. The data was tabulated by AoA from the latest Census Bureau population estimates. Data on various age groups is presented.
Also, AoA recently launched its online AGing Integrated Database (AGID) system. With AGID, users may generate tables from four key AoA funded surveys and AoA program information systems as well as data on population characteristics from the Census Bureau,. The system allows users to produce customized tables in a step-by-step non-technical process and output the results in print or spreadsheet form. Users can also build customized state-level tables from multiple databases.
A recent report on an investigation and audit of the Social Security Administration (SSA) Supplemental Security Income(SSI) program by the agency's Office of Inspector General (IG) was released in August. The IG review looked to see if SSA had properly identified and resolved underpayments on prior SSI records. Underpayment means that SSA owes the SSI recipient SSI payments because the “amount due is greater than amount paid”. Additionally, underpayments are used to offset any SSI overpayments.
Generally, SSI underpayments are the result of some non-medical change like unearned or earned income or changes with the living arrangement of the person who is disabled. Social Security regulations and agency POMS instructions call for underpayment to be paid to the SSI recipient in the month after the underpayment is discovered by SSA. That seems to be a problem though, according to the study, SSA rarely does this follow through needed to make these underpayments.
Why is there so little follow through on underpayments? SSA rules say that underpayments must be handled by the local SSA office to make sure that the SSI underpayments are paid. This makes sense since the local office is the entity responsible for calculating SSI payments but there is little oversightover the process. The problem is while overpayments are collected with enthusiasm, the same zeal does not translate to paying out underpayments. This could be because of staff shortages at local SSA offices. The IG report says that local SSA offices did not identify and resolve in the surveyed group 79.3% of the time. Underpayments are just not paid to the individual unless they initiate some pro-active self advocacy or representation.
Most people with disabilities who get receive SSI rely on SSA to get it right. These recipients of SSI are after all severely disabled.
© Daniel Scarborough, 2007
A Proclamation by the President of the United States of America
National Disability Employment Awareness Month is an opportunity to recognize the contributions and accomplishments of Americans with disabilities and to underscore our Nation's commitment to advancing employment opportunities for all our citizens.
Americans with disabilities strengthen our country's workforce, and their achievements help keep our Nation the world's economic leader. Landmark reforms such as the Americans with Disabilities Act of 1990 have helped to ensure that individuals with disabilities are better able to engage in productive work and participate fully in the life of our Nation. It is important that we continue to expand on these opportunities for Americans with disabilities by eliminating the barriers and false perceptions that hinder them from joining the workforce. By enhancing the workplace environment for people with disabilities, employers can help provide access to jobs that allow these individuals to demonstrate their potential and realize their dreams.
Since 2001, my New Freedom Initiative has helped promote the full participation of people with disabilities in all areas of society, including education, training, and employment Programs such as "Ticket to Work" and services at One-Stop Career Centers have helped improve access to employment training and placement services for individuals who want to work. Throughout the Federal Government, we have worked to improve access to jobs for individuals with disabilities and to promote greater inclusiveness in the workforce. Individuals and employers can learn more about the Federal Government's disability-related programs by visiting DisabilityInfo.gov. We will continue to build on the progress that has been made for individuals with disabilities and will work to ensure that our Nation remains a place of opportunity for all Americans.
To recognize the contributions of Americans with disabilities and to encourage all citizens to ensure equal opportunity in the workforce, the Congress (36 U.S.C. 121) has designated October of each year as "National Disability Employment Awareness Month."
NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, do hereby proclaim October 2007 as National Disability Employment Awareness Month. I call upon Government officials, labor leaders, employers, and the people of the United States to observe this month with appropriate programs, ceremonies, and activities.
IN WITNESS WHEREOF, I have here unto set my hand this twenty-eighth day of September, in the year of our Lord two thousand seven, and of the Independence of the United States of America the two hundred and thirty-second.
GEORGE W. BUSH
Secretary Mike Leavitt of the US Dept of Health and Human Services has started writing a blog. It's not clear if this is an official government publication. The Secretary shares his observations and 'hopes to open conversation about health and the related challenges" that face the nation.
WASHINGTON, D.C. – The Ways and Means Health Subcommittee today passed HR 1424, the Paul Wellstone Mental Health and Addiction Equity Act of 2007(September 19, 2007).
The bill, which has already passed the Education and Labor Committee and has been referred to the Energy and Commerce Committee, was approved 10 to 3.
The measure requires group health plans and group health insurers to establish parity with all mental illnesses and substance-related disorders benefits with medical and surgical benefits.
Specifically, the bill amends section 712 of the Employee Retirement Income Security Act of 1974, section 2705 of the Public Health Service Act, and section 9812 of the Internal Revenue Code of 1986 to require equity in the provision of mental health and substance-related disorder benefits under group health plans.
The Department of Transportation's (DOT) Federal Transit Administration (FTA) has announced new funding for the Over-the-Road Bus (OTRB) Accessibility Program. This program requires that new buses must be accessible, with wheelchair lifts and accommodations that allow passengers to ride in their own wheelchairs. Grant application deadline is November 13.
Ben was kind enough to share his thoughts from the Washington Post on this Labor Day with the National PASS Network.
Thanks Ben.
Daniel Scarborough
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Jerry Lewis' annual MDA Labor Day Telethon means well but misses the point.
By Ben Mattlin
When I was six years old, I appeared on the Jerry Lewis Labor Day Telethon for the Muscular Dystrophy Association. I don't have muscular dystrophy, but I was born with spinal muscular atrophy, a similar progressive neuromuscular weakness. I have never walked or stood.
On the broadcast, I was asked for my name and age. That's about all. Then I was dismissed.
I never met Jerry Lewis. I never became famous, as I'd dreamed. I was cute, though, with big blue eyes and unruly blond curls, and I was in several magazine and newspaper ads for MDA. For one of them, I was positioned standing in leg braces -- which I'd used years earlier for physical therapy, before discovering the torture didn't actually do me any good -- and I was told the caption over my head would be, "If I grow up, I want to be a fireman."
I didn't like this. If? My prognosis was a normal life expectancy. Besides, I didn't want to be a fireman! I wanted to be a scientist or a detective. So, in the photo, I'm crossing my fingers, where no one can see. I never did another ad.
Many years later, when I was an adult, I used this image to protest the telethon's simplistic treatment of "Jerry's Kids." I found that many others were mounting similar demonstrations. Now I find myself asking whether our message was heard. The TV hosts still ask us to "help Jerry's kids." But does the public understand that, even more than help, those of us with disabilities want respect?
Perhaps. MDA now pays lip service at least to the idea of disability rights. The telethon now shows some kids with disabilities doing active things. Yet fundamental problems remain.
Today's telethon, for example, will feature nondisabled celebrities onstage raising money for disabled kids, who are mostly offstage. I know the purpose of the telethon is to raise money, and that people won't tune in unless there are performers they want to see. Nevertheless, can you imagine an NAACP fundraiser hosted exclusively by white people?
If you are not disabled, you may think this is a relatively minor issue. But it matters. The other day my wife and I were at the theater with our two young children. During the intermission, an usher dutifully came over and asked my wife if I needed to use the restroom.
"How should I know?" she answered. "If you have a question for my husband, why don't you ask him yourself?"
The usher did not make that mistake again.
The larger issue is one of respect. And while I understand the sympathetic impulse (and marketing power) of a slogan like "Help Jerry's Kids," I don't think it helps us gain respect.
Of course, MDA may respect the disabled more than its fund-raising tactics imply. If it wants to stand out as an advocate for disability rights, however, it should set a better example -- and demand that its corporate contributors do as well.
When most people see those of us with severe, progressive neurological conditions, they want to help, and I am not ungrateful. The desire to cure is probably human nature. And MDA's main mission is to be a medical charity; it claims to spend 77 cents of every dollar it raises on services, an admirable percentage, and finances hundreds of clinics and medical researchers.
Still, for the past 30 years, the message of the disability-rights movement has been as consistent as it is simple: We're fine as we are. We don't need fixing. We need access. We need respect. We need work. In other words, we need the same things everybody else does.
So today, I won't be watching the telethon. My wife and I and our two kids have better things to do.
Ben Mattlin is a writer and editor who lives in Los Angeles.
According to press reports, in an attempt to make the NFL's failing professional football players organization disability process work, Commissioner Roger Goodell Executive and Gene Upshaw, Director of the National Football League Players Association have proposed using the disability determination process used by the Social Security Administration for disabled applicants for SSDI and SSI.
"If Social Security says a player can't work, [ the NFL] should automatically approve him right away," Upshaw said in press reports. "We shouldn't have to have him go through all this other crap." (why is any this not evoking any empathy on my part).
What could these people be thinking? Haven't they been reading the news lately? The Social Security disability determination process is as broken as any public program can be. Nationally nearly 70% of people who apply are initially turned down for disability benefits. The SSA appeals process is a waiting game measured in long years. Many people are winding through this grinding and demeaning process that can last 3 and 4 years. Holding the SSA disability process out as a paragon of any kind of efficiency is just about as uninformed as one could be in these United States. SSA's disability process is certainly not a model for solution to anyone's disability assistance needs with the agency's service problems.
Perhaps all this seemingly intellectual decision is an attempt to avoid Congressional intervention. A House Judiciary Subcommittee on Commercial and Administrative Law hearing is scheduled for June 26 .
Why is any of this important? From a national disability benefit policy standpoint, it is just not wise for private disability providers to set a precedent that includes a prior approval by the Social Security Administration for private disability benefits. The NFL might want to use the SSA standards, but they do not need to pile-on the already overburdened and inefficient Social Security Administration application process with its labor problems.
© Daniel Scarborough, 2007
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