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December 2003

New White Paper Released on Mental Health Systems and the Deaf

National Association of the Deaf (NAD) President Andrew J. Lange announced that the NAD has released a new position statement on mental health services for people who are deaf and hard of hearing. "This is a critical issue and the NAD is committed to improving mental health care service delivery systems for deaf and hard of hearing individuals. The Board is grateful to all those who worked hard to develop this statement, particularly Randall R. Myers, Ph.D., LCSW-C, chair of the NAD Mental Health Committee," stated Lange.

Highlights include:

  • An expectation that services for deaf and hard of hearing individuals be equal in quality and effectiveness to those provided to persons who are able to hear;
  • An expectation that service providers be able to communicate directly with deaf and hard of hearing individuals and be aware of and sensitive to the cultural and linguistic factors of such individuals;
  • An expectation that service providers understand the psychosocial impact hearing loss has on these individuals;
  • The position that appropriate use of services and adaptive technology may be needed and is best identified and utilized by the consumer and his/her family members, including qualified and certified interpreters, assistive listening devices and real-time captioning services and telemental health care technology;
  • A list of recommended state actions including the establishment of an advisory committee, the provision of a continuum of services, and the involvement of deaf and hard of hearing consumers and their families in the decision making process.

"We will be sharing this position paper with mental health providers, consumers, and advocates throughout the country. The NAD is committed to working with mental health systems and service providers to meet the needs of deaf and hard of hearing individuals," commented Myers. The statement was produced by the NAD Mental Health Committee in coordination with State Directors of Mental Health and NAD staff.

"This position paper is another step in ongoing efforts of the NAD to promote equal opportunity for full participation in society for each and every deaf and hard of hearing individual." The position paper was posted Nov. 14, 2003.

GO NAD position paper

Source: Great Lakes ADA and Accessible IT Center

You Have the Right to a Sign Language Expert

By Mike Anton, LA Times Staff Writer

On television a cop reading someone his Miranda rights is a robotic cliche. But there's nothing routine when the suspect is a deaf person. In fact, the deaf can lose their constitutional rights in the time it takes to raise an eyebrow.

In the nuanced lexicon that is American Sign Language (ASL), a raised eyebrow while leaning the upper body to the right are crucial movements when conveying Miranda warnings against self-incrimination. Failing to do so profoundly changes the syntax of Miranda — and its meaning.

"If an interpreter lacks the ability to do that, it means that the phrase 'If you can't afford an attorney, one will be appointed free of charge if you wish' is understood by a deaf person as 'You can't afford an attorney and one is being appointed for you,'" said Rob Hoopes, a professor of sign language interpretation at Sinclair College in Dayton OH who has studied how the deaf are treated by police.

"So they don't ask for an attorney. They just sit there in silence," he added. "And if you don't ask for an attorney, you are agreeing to go on with the interrogation."

When a deaf person becomes the target of a police investigation, the communications gulf can lead to faulty interrogations that can strip suspects of their rights — and ultimately their freedom. "We need to keep educating deaf people that they have the right to have a qualified interpreter when they're interviewed by police — and to keep educating police to call for an interpreter when interviewing deaf people," said Patricia Hughes, chief executive of the Greater Los Angeles Council on Deafness. Federal law requires police to provide a sign language interpreter when questioning a deaf person. The deaf council's nonprofit LIFESIGNS Inc. gets 10 to 20 requests a month for a trained interpreter in criminal cases — from those who've been arrested and from police.

But advocates for the deaf say it's more common for authorities to use parents or friends of the suspect, or officers with limited training in sign language, when questioning a deaf person.

Hoopes studied the performance of three levels of expertise by sign language interpreters in conveying the legal rights contained in the Miranda warnings, the basic constitutional rights in the United States against self-incrimination, to remain silent, and to legal counsel, among others. He found that deaf subjects were able to understand only one in 20 words signed by beginning interpreters — those with a year of experience. Those who had completed an associate's degree in interpreting did much better, but still conveyed little grammar — which left the meaning of Miranda muddy. Only interpreters with 10 or more years of training were able to get across the nuances, Hoopes said. ...

Complicating the issue is the fact that the average deaf high school student has a fourth-grade reading ability, experts at the Gallaudet Research Institute say. To many who can't hear, the written word is akin to a second language.

"If a police officer pulls over someone who's deaf for speeding, then communicating with a note is fine," said Eve Hill, an attorney with the Western Law Center for Disability Rights in Los Angeles. "But if it's any more serious than a speeding ticket, police need an experienced sign interpreter."

The center in September settled a federal civil rights lawsuit with the Los Angeles Police Department in a case that arose from the 1999 arrest of a 72-year-old deaf man whose attempt to communicate with officers using sign language was seen as an aggressive act. Police who responded to a report of a parking lot scuffle knocked Sanford Diamond to the ground, injuring him. Diamond was held for hours — why, he didn't know. Charges against him eventually were dropped.

An officer trained in finger spelling — not sign language — tried to communicate with Diamond.

"Imagine having a conversation we're having now if I had to spell out every word with my hands," Hill said. "You wouldn't understand what's going on."

Diamond won $130,000 in damages from the LAPD, which also agreed to provide deaf suspects, witnesses and crime victims with a sign language interpreter within 45 minutes, better train its officers and do outreach among deaf people.

"In society, the deaf are looked at differently than other language minorities," Hoopes said. "You never could imagine one of us having a year of college Spanish attempting to interpret for a Spanish-speaking person in a capital criminal case."

"But," he added, "somehow, sign language doesn't seem as complicated to people who aren't deaf."

Source: The Los Angeles Times, 11/14/03.


Government Develops Strategy to Fight Autism

By Jane Gross

Propelled by the skyrocketing number of diagnoses of the perplexing brain disorder of autism in children, federal officials have for the first time mapped out a long-term, interagency plan to deal with the problem.

The plan includes objectives like the development of teaching methods that will allow 90 percent of autistic children to speak; the identification of genetic and non-genetic causes of the condition; and adequate services for all afflicted children in the next 7 to 10 years.

The plan, which is to be unveiled at a major autism conference in Washington that begins today, signals the start of the push-pull process over financing. Such a plan was required by the Congressional appropriations committee that controls the budget for scientific and medical research and education programs of all kinds.

Few of the nearly 150,000 autistic children and young adults now getting special education services under federal law will benefit significantly, experts say, since the most effective treatment involves early, intensive behavior therapy, which is poorly understood and in limited supply.

Autism is a disorder with a wide range of symptoms sometimes so mild as to allow a child to function in a regular classroom with special services and at other times so severe that a child is mute and institutionalized.

But the three-pronged plan sets goals for more coordinated biomedical research, earlier screening and diagnosis, and effective therapy. The plan demands, for the first time, collaboration between scientists, clinicians, educators and policymakers in an array of federal agencies.

"Millions of people need help," said Robert L Buck, president of the Autism Society of America, the nation's oldest and largest autism advocacy group. "And this is a new opportunity and a very exciting one."

The need is enormous. According to federal education officials, in 1992-93, fewer than 20,000 of the nation's nearly five million special education students, ages 6 to 21, were considered autistic. Ten years later, nearly 120,000 of six million special education students had autism. That does not count the 19,000 children ages 3 to 5 receiving autism services under federal law, or those even younger whose numbers have not been tallied.

Nobody knows the cause of the surge, although epidemiologists suspect it is largely the result of refined diagnosis and public awareness. But that does not change the dimensions of the problem, which is straining schools, medical facilities, and families. Nor does it affect forecasts of growing caseloads for decades to come. ...

The plan, which will be reviewed on Friday by the Interagency Autism Coordinating Council that was established by the Child Health Act of 2000, is presented in broad brush strokes, with few details and no price tags. It was drafted by a panel of scientists to assess the state of autism research and identify the roadblocks that might be hindering the progress of understanding the cause of the disorder and the best treatment options.

The plan lays out a timeline, in increments of 1 to 3 years, 4 to 6 years and 7 to 10 years and then ranks goals according to the likelihood of achieving them. Realistic goals in each of the three stages include the development, evaluation and institution of effective treatments, in collaboration with the Department of Education. More challenging goals, by contrast, include finding effective drug treatment for the symptoms of autism, identifying environmental factors that may contribute to the development of the disorder and, in effect, curing 25 percent of autistic children through early diagnosis and treatment. ...

Some parents are likely to be frustrated by the plan's suggestion that it will take at least sever years to provide treatment for all who need it. ...

Many of the researchers and clinicians in the field credit the advocacy community with galvanizing the government, following in the footsteps of AIDS advocates in the early 1980's. There are several such organizations, all included at the conference, who over the years have shifted their emphasis from looking for a cure to also fighting for a more systematic study of treatments and more services for children.

There is wide agreement that intensive behavioral therapy, which can include breaking a simple task like hand washing into a dozen component parts, beginning at the earliest possible age is highly effective for many children. What remains a mystery is which children benefit and why, which techniques work best sustained over time. ...

Parents of autistic children are stymied by how difficult it is to find properly trained behavioral therapists. ...

Source: The New York Times, 11/19/03


The Lobbying Law is More Charitable Than They Think

By Jeffrey M. Berry

[Below please find an outstanding, must-read article for all nonprofit 501(C)(3) organizations. There is a powerful, if misguided, perception that nonprofit organizations cannot "lobby." But, as political scientist Jeffrey Berry shows below, the IRS rules are actual much more favorable. "Not only can charitable nonprofits engage in more lobbying than is commonly accepted, they can lobby extensively if they take advantage of a 1976 law that the Internal Revenue Service seems to have no interest in publicizing." This is important, says Berry, because nonprofit organizations serve a vital function in supporting under-represented groups. But if these organizations wrongfully assume they cannot lobby, they are failing to serve the needs of their constituents while well-financed for-profit organizations lobby at will. If you work with a nonprofit organization, READ THIS ARTICLE!! It could make a HUGE difference in advancing favorable disability policies.

— Jonathan Young, JFA Moderator, AAPD]


The leaders of the nation's nonprofits do many things well, but representing their clients' interests before government is not one of them. In the course of a major research study that included interviews with the chief executives of tax-deductible nonprofits, I found them remarkably ill-informed about the primary law that governs their operations. When it comes to their rights to lobby, many believe they have no rights at all. "I have to wait until a legislator contacts us," said one executive director. Another stated unequivocally, "We're not allowed to lobby. We're not allowed to influence public policy."

Such views are not merely wrong, they're harmful. Not only can charitable nonprofits engage in more lobbying than is commonly accepted, they can lobby extensively if they take advantage of a 1976 law that the Internal Revenue Service seems to have no interest in publicizing.

Nonprofits that can offer donors a tax deduction for their contributions play a special role in American society, and that role is growing. There are more than 900,000 nonprofits now registered with the IRS, more than three times the number 25 years ago. Most are small, with no presence in Washington. Among those large enough to file a tax return (about 210,000), roughly half are either health care or social service providers. They are the foot soldiers in a largely private system that delivers critical services to the disadvantaged. They are often closer to the problems — and the solutions — than the policymakers in city halls, state capitals and Washington. Yet the fear of an IRS audit, no matter how unlikely, has deprived many nonprofits of their voice and has hurt the very constituencies that they intend to serve.

To gather systematic evidence on the role of nonprofits in the public policymaking process, my research team and I surveyed more than 1,700 tax-deductible nonprofits drawn randomly from IRS records. The results demonstrate that most charitable nonprofits sharply limit their advocacy before state legislatures and Congress because they worry about violating the lobbying provisions of the Internal Revenue Code. (The largest charitable nonprofits, such as the American Cancer Society and the American Heart Association, are sophisticated enough not to be intimidated by the law, but these mega-organizations are a sliver of the nonprofit world.)

A few definitions might be helpful here. Charitable nonprofits, whose tax-deductible status is an enormous benefit for their fund-raising efforts, are often referred to as 501(c)(3)s, after that portion of the IRS Code. Nonprofits that cannot offer a tax deduction to their contributors — such as labor unions and trade associations -- are regulated under different provisions of section 501. These 501(c)(5)s and 501(c)(6)s are free to engage in unlimited lobbying.

We found that the typical executive director of a 501(c)(3) has little understanding of what the law actually says. Almost half of those surveyed are so ignorant of the law that they don't even believe their organization has the right to take a public stand on federal legislation (perfectly permissible), while 45 percent believe they are not allowed to sponsor a debate featuring candidates running for public office (they can't support a candidate, but a candidate forum is just fine).

There's good reason why many nonprofit leaders have trouble understanding what they can and cannot do in the public policymaking process. The law is a patchwork of confusing, contradictory and unworkable provisions. The heart of the problem is that 501(c)(3) says that nonprofits may lobby but not to any "substantial" degree. Despite repeated requests over the years, the IRS resolutely refuses to define what qualifies as "substantial." Nonprofits are left to guess.

Yet, nonprofits are allowed to educate legislators and staffers without constraint. So leaders of nonprofits believe they can "educate"" substantially, but not "lobby" substantially. For political scientists, this is a preposterous distinction. To educate policymakers is to lobby.

The inconsistencies and contradictions under 501(c)(3) are breathtaking — they're a logician's nightmare. Nevertheless, it is difficult to simply get rid of this regulatory framework. A nonprofit that receives a tax-deductible donation is getting an indirect government subsidy. The dollars that the Treasury loses to nonprofits must be made up through higher taxes on all of us. No one would argue that nonprofits should be able to do whatever they want with charitable donations.

Although regulation is necessary, this particular set of restrictions is strikingly discriminatory. No other sector of the interest group universe is as constrained in its advocacy as are 501(c)(3)s. This creates a huge imbalance. The so-called Gucci crowd on K Street can lobby as much as it wants and spend as much as it wants in representing trade associations or corporations before government. Yet, legally speaking, disability groups, hospices, community health centers and other 501(c)(3)s are regarded as something of a threat to the integrity of our political process. This is too large a price to pay for tax deductibility.

The lobbying restriction for nonprofits has its origins in Treasury Department regulations issued in 1919. Congress strengthened these regulations in 1934, adopting language that equated attempts to influence legislation with "carrying on propaganda." Included in the 1934 law, for the first time, was the stipulation that any nonprofit engaged in "substantial" lobbying could not retain its tax-deductible status. This law, with its definition of lobbying as propaganda, remains in effect today.

Many of our interviewees told us they believed that the IRS was vigilantly monitoring their political activity. On a number of occasions we heard the story of how the IRS busted the Sierra Club for its lobbying. The venerable environmental group infuriated a powerful member of Congress, Democratic Rep. Wayne Aspinall of Colorado, by taking out newspaper ads ridiculing a proposal to flood part of the Grand Canyon. The day after the ads ran, the IRS revoked the Sierra Club's tax-deductible status. Our respondents spoke knowingly of this episode, as if it happened recently. It took place in 1966.

That the Sierra Club case still reverberates today is testament to how scared nonprofits are of the IRS. This is ironic because the modest, cobwebby Tax Exempt Office at the IRS hardly has the resources to engage in anything more than symbolic oversight of nonprofits. Contrary to what many nonprofit leaders believe, the IRS is not on the lookout for evidence of any form of lobbying. Only the visible signs of excessive lobbying — activity that presents a challenge to the "substantial" standard — has drawn the agency's interest.

If the IRS has a coherent strategy, it seems to be selective enforcement. Agency officials know that audits of a small number of nonprofits send shock waves throughout their larger communities. Most worrisome is that the office will undertake a review based on the complaints of an organization's rivals.

Compounding the problem of an ambiguous law and erratic enforcement is the passivity of nonprofit CEOs. By failing to learn the law, they are willing accomplices. Too often, when they do lobby, they pretend otherwise. One executive director told me that "We harass our state legislator all the time," while insisting that her organization did not belong in our study because "we are not involved in public affairs."

The irony in all of this is that there is a solution already in place that allows nonprofits to lobby without having to worry. In 1976 Congress passed a tax bill that included a specific accounting mechanism so that nonprofits no longer would have to guess what divides substantial from insubstantial lobbying. This much-needed alternative method was then, unfortunately, turned over to the IRS's Tax Exempt Office to implement. To call its pace in writing the regulations snail-like would be unfair to snails. It took 14 years before the office issued regulations.

The 1976 alternative, known as the "H election," is crystal clear in specifying the amounts that a nonprofit can expend on lobbying. Based on a sliding scale keyed to annual income, a nonprofit can spend up to as much as 20 percent of its revenues on lobbying. And because the regulations for the H election define lobbying rather narrowly, very little of what a nonprofit H elector does in its advocacy efforts counts as a lobbying expenditure. In short, it's difficult for a typical nonprofit to ever reach the H expenditure ceilings.

The H election is something of a stealth policy. Only about 2 percent of all 501(c)(3)s have chosen this option. When we asked the head of one statewide nonprofit association if he knew of the H election, his response was a common one. "I'm completely ignorant of it," he confessed.

So what's the catch? There isn't one, really — only that the H election requires nonprofits to keep a record of their spending so they can prove they haven't exceeded the established limits.

The good news is that taking the H election could not be easier. Form 5768, which can be downloaded from the tax forms box at www.irs.gov, only asks for an organization's name, address and a signature. It takes no more than 60 seconds to fill out. The IRS has also issued formal guidelines indicating that the H election is not a red flag for an audit and it appears to have kept its word.

Nonprofits are a lifeline for millions — for battered women, immigrants, home bound senior citizens, AIDS patients, the 43 million Americans without health insurance and countless other constituencies who all too often fall through this nation's safety net. As government itself grows leaner, it is relying ever more heavily on nonprofits to do its work. From a standpoint of good government, the best policy would promote communication between government and its vendors.

Although it is legal for nonprofits to lobby under the "substantial" standard, it's clear that most are inhibited by it. By taking the H election, 501(c)(3)s can maintain their tax deductibility while becoming more aggressive on behalf of the disadvantaged segments of American society who come to them for social services and health care. It's unlikely, however, that the H election will ever become widely adopted without a firm push from the IRS. As a result, those most in need of a powerful voice in the political system will continue to receive the least representation. The obstacles created by Section 501(c)(3) aren't just bad public policy. They're unjust.

[Jeffrey Berry is a professor of political science at Tufts University and the author (with David F. Arons) of the just-published "A Voice for Nonprofits" (Brookings Institution), from which this article is drawn].

Source: The Washington Post, 11/30/03


Update on Terri

[Below Mark Johnson provides an update on Terri Schiavo's situation in Florida. While many national disability organizations have joined together in voicing strong support for enabling Terri to live as a statement on the worth of people with disabilities, not everyone has agreed. In the interest of giving voice to the diversity of disability community opinion, following Mark's update is a response by Marvin Wasserman, arguing that there should not be a "community position" on such a controversial issue where people with disabilities can be on both sides of the debate.
— Jonathan Young, JFA Moderator, AAPD]


[Dr. Jay Wolfson, an independent guardian, submitted his report to Governor Jeb Bush on Tuesday, December 2.]

Wolfson said in his report that as long as controversy exists in the case, an independent guardian whose only charge is to look out for Terri Schiavo's interest should be appointed to represent her.

He recommended that swallowing tests be conducted on Terri, to see if she would be able to eat on her own.

Wolfson is asking to remain on the case in hopes of settling the fight between her husband, her parents and the governor, the report said. He had attempted to broker a settlement between Michael Schiavo, the governor and his in-laws in their battle over the fate of Terri Schiavo, the report said. But on Sunday the negotiations broke down and no agreement could be reached.

Next, the judge could order the trial to begin. In other words, Governor Bush and Michael Schiavo would finally face off in court to debate whether or not "Terri's Law" is constitutional. If the case begins, Governor Bush wants the judge in this case to be removed. He also wants it to be a jury trial, not one decided solely by a judge. Pinellas Circuit Court Judge W. Douglas Baird granted a motion by Michael Schiavo's attorney, stopping Bush's attorneys from taking depositions from seven people, including Michael Schiavo and the woman with whom he now lives. Baird said that he may allow some questioning to take place later in the case.

Bush said nothing in the report has changed his mind that it was right to keep Terri Schiavo alive.

Sources:
Independant Guardian Tells Bush Terri's Condition Hopeless, Should Get Swallowing Test [Lifenews.com]
Major Developments In Terry Schiavo Case Could Come Today [wftv.com]


Criticism of Organizations' Position

By Marvin Wasserman

I believe that this is a controversial issue even within our own community. Even our own community leadership has not told the "whole story." Ms. Schiavo suffered a heart attack more than 13 years ago and the loss of oxygen to her brain caused her to be in what doctors call a "persistent vegetative state." The so called responses that she gives to her family in the video are not indicative of anything positive, just subject to "positive thinking" on the part of others.

There is really no evidence that Terri Schiavo will improve or have the opportunity to have a real life. Millions of people, including myself, have had to make the wrenching decision about whether to remove life support from a loved one when there is no hope for a return of brain function. The decision is difficult enough without having the state, religion, and individual interlopers looking over your shoulder to intervene in what is essentially a private family matter. If you really loved this individual, would you want him or her to live in that state? And even if there is money involved, would you make a decision that may be contrary to your loved one's desire and what you believe is his or her best interest because your motives may be suspect? After you give your best shot at trying to rehabilitate him or her and fail, should you be demonized because you try to go on with your own life while grieving?

Her husband has lived in this state of uncertainty for all this time, and he is now condemned for wanting to go on with his own life, now that he can't do anything more for his wife. The religious right have made this issue a cause celebre, along with right-wing Republicans such as Jeb Bush. Why our own community is allowing them to lead us is beyond me.

I have stated my concerns on the Disabilities Network of New York City listserv and have been astounded by the number of people who have responded (off list) that they agree with me. We should not develop a "community position" on such an emotional issue based on who shouts the loudest.

Source: Justice For All Moderator


Parents of Autistic Child Win Appeal

Rock Island, IL, 11/5/03 — On behalf of parents of a two year old with autism, Equip For Equality (EFE) ... won reimbursement for parent training in Applied Behavioral Analysis (ABA) therapy in an administrative hearing ruling from the IL Dept. of Human Services (DHS).

[The ABA is an increasingly used methodology for training young children with autism that is often very successful in encouraging speech and language production and other pre-academic skills.]

The ruling, which was not appealed by the state, ordered DHS to pay for the parents' expenses to attend ABA therapy seminars and specialized speech therapy training. The training was essential for the parents to provide their share of services under their child's individual plan under Part C of the Individuals with Disabilities Education Act (IDEA), the federal law establishing entitlement to developmental services for infants and toddlers with disabilities.

DHS, the state agency that administers and coordinates the Early Intervention Program for children who have developmental delays from birth to three in Illinois, initially disputed the ruling, but has reimbursed the parents for the trainings costs they incurred.

The DHS decision also pointed out systemic procedural and substantive violations which were committed by DHS when they failed to provide the parents with timely notice of essential evaluation reports about their son.

"We are pleased that DHS was willing to comply with the hearing officer's order instead of filing a court appeal," said Janet Cartwright, Senior Attorney for EFE. "This ruling was a significant win for parents of children with severe disabilities, such as autism. It indicates that, if parents are dissatisfied with the level or quality of services their children are receiving in the Early Intervention Program, and, if they exercise their right to file an administrative complaint and request all of the records in their child's file, they will discover information that they may not have known otherwise; and the document discoveries may assist them in obtaining the remedies they seek."

Note: Giant Steps Illinois Inc. is a private therapeutic day school. For more information, call 630/455.5730.

Source: Equip for Equality, 11/5/03.


For Sale : Wheelchair

Hoveround MPV-4 electric wheelchair in excellent condition, like new. All original paperwork, instruction booklets, etc. are available. Asking $1500. Call 773/646.3088.


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