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[Cover]
Disability Watch
The Status of People with Disabilities in the United States, Volume 2
Featuring Reports on:
Access to Health Care & Health Insurance
Learning Disabilities
Mental Health Disabilities
Employment & Earnings
Technology & Disability
[Inside Cover]
What is DRA?
Disability Rights Advocates (DRA) is a non-profit corporation which protects the civil and human rights of people with disabilities throughout the United States and the world. DRA is run by people with disabilities for people with disabilities. We work to end discrimination in access to public accommodations, employment, transportation, health care, insurance, education, and housing. Our mission is to ensure that people with disabilities will no longer be treated as second class citizens. DRA serves all disabilities, physical, mental, and emotional, and focuses on systemic problems rather than individual cases. We have made it a priority to protect those who are the most under represented, such as disabled children, people with sensory disabilities, and those who have been recent victims of vicious stereotypes such as people with mental health, learning, and other hidden disabilities.
Headquartered in the San Francisco Bay Area, DRA has also established an affiliate office in Budapest, Hungary, and provides help and technical assistance in cities throughout the United States and Eastern Europe. DRA monitors the implementation of national policy, supports a network of disability organizations, produces “Watch” reports, and provides advocacy and litigation where necessary.
DRA has successfully challenged unfair practices by many of the largest and most powerful companies and institutions in the nation. We have successfully represented disabled foster care children, wheelchair users of mass transit, deaf patients at hospitals, and disabled children isolated from their classmates. DRA has brought class actions and other high impact litigation to end discrimination by major retailers; hotel, restaurant, and gas station chains; universities, cities, and counties; health maintenance organizations; and other powerful entities. The results have improved access and integration for million of people with disabilities.
DRA is a private non-profit organization supported by tax-deductible grants and individual donations.
[Title Page]
Disability Watch
Volume 2
The Status of People with Disabilities in the United States
A report by Disability Rights Advocates, Inc.
Principal author & analyst: H. Stephen Kaye, Ph.D.
Disability Statistics Center
University of California, San Francisco
Introduction by Danny Glover
[Copyright Page]
Designed and produced by
Public Media Center
Photography by Pat Kirkpatrick, p.5, p.8, p.11, p.19. p.24, p.25, p.31, p.50, p.53, p.70, p.73, p.77, p.84, p.85, p.86, p.89, p.106, p.111; Lydia Gans, p.49, p.69, p.79, p.98; Kathy Sloane, p.12, p.23, p.39, p.42, p.60; Susan Ragan p.65; and Wernher Krutein/www.photovault.com, p. 44; cover photo ibid.
Copyright © 2001 by Disability Rights Advocates, a nonprofit corporation, and
H. Stephen Kaye.
Library of Congress Control Number: 2001091329
ISBN: 0-9662355-1-7
To order additional copies of Disability Watch, Volume 2,
please send a check made payable to DRA for $19.95 to:
Disability Rights Advocates
Attn: Disability Watch, Volume 2
449 15th Street, Suite 303
Oakland, CA 94612
If you order 10 or more, DRA will give you a discounted rate. Priority mail rates available.
Please contact DRA by E-mail: general@dralegal.org; by telephone: (510) 451-8644, TTY: (510)451-8716 ;
or Fax: (510) 451-8511 Web address http://www.dralegal.org
[Acknowledgements]
Disability Rights Advocates would like to thank Sid Wolinsky, Robin Goldfaden &
Pat Kirkpatrick for their contributions and work that made this publication possible.
We would also like to thank the following financial contributors:
THE CALIFORNIA ENDOWMENT
DEUTSCHE BANK
LD ACCESS FOUNDATION, INC.
NORDSTROM, INC.
STEWART R. MOTT CHARITABLE TRUST
The Disability Statistics Center
at the University of California, San Francisco, is funded by
The National Institute on Disability and Rehabilitation Research,
U.S. Department of Education, under ED grant H133B980045.
The views expressed herein are those of the authors.
No official endorsement by the U.S. Department of Education is intended.
PREFACE
How far we have come! For centuries, people with disabilities have been stigmatized and excluded from mainstream economic and social life. Children with disabilities were routinely deprived of a public education. Severely disabled persons were forbidden to vote, to raise families, or even to live in the community. Physical and social barriers permeated our society, severely limiting the ability of people with disabilities to work, socialize, and participate in the fabric of American life.
In passing the Americans With Disabilities Act (ADA), Congress found that:
Our society is still infected by the ancient, now almost subconscious assumption that people with disabilities are less than fully human and therefore are not fully eligible for the opportunities, services, and support systems which are available to other people as a matter of right. The result is massive, society-wide discrimination.
We have made great strides since then in removing many types of barriers. Many more public buildings now provide ramps and other access features. Transportation systems are finally beginning to become useable by people with mobility disabilities, with lifts on many more buses, elevators to mass transit stops, and detectable warnings for vision impaired persons to make these systems useable. Children with disabilities are increasingly being mainstreamed within our public education system. Social, religious, and cultural events are becoming more open to people with all types of disabilities, ranging from the removal of physical barriers to the provision of sign language interpreters and Braille information.
As a person who uses a wheelchair, I have seen many opportunities open up to me. I can get around more freely and participate more fully in the life of my community. For my children, there is no longer any question about whether dad can be a full part of their lives—more and more people with disabilities are raising families and holding down productive jobs. And as people with disabilities do participate more fully, attitudinal barriers come crashing down as well. People see that what matters most is not the disability but the person. My children and their friends, for example, see not just the wheelchair I use to get around, but the person in the wheelchair. At the same time, I am struck every day by how much more there is to do before the dream of full integration and opportunity for people with disabilities becomes real in many areas of American life. As detailed in our previous Disability Watch report, people with disabilities in general still face substantial barriers in many areas, such as education, transportation, and integration into mainstream life. This Disability Watch report takes a close look, ten years after passage of the ADA, at the status of people with disabilities in several key areas, and reveals both the progress and the barriers that remain. The health care system, for example, still ignores the most basic needs of many men, women, and children with disabilities. Prejudices against people with hidden disabilities, such as mental and learning disabilities, are rampant.
Although developing technologies hold the promise of enabling people with many types of disabilities to overcome traditional barriers, in fact people with disabilities as a whole are falling further and further behind in the digital divide. Finally, people with substantial disabilities are still vastly unemployed and underemployed, despite a booming economy.
Disability Watch, Volume 2 also includes interviews with individuals who describe the impact of these opportunities and barriers. People like Johnnie Lacy, who has been denied basic health care by our medical system for decades simply because she uses a wheelchair and cannot stand to get onto exam tables or use inaccessible mammography machines. People like Babaranti Oloyede, who continues to be denied basic accommodations in his workplace for his hearing disability, such as a sign language interpreter for safety and training meetings. People like Mark Gottlieb, who maintains a productive work life despite his mental disability, yet finds social prejudices against people with mental disabilities to be rampant. These are just a few of the people profiled in this Disability Watch who are struggling to overcome the discrimination that still pervades much of our society.
Martin Luther King Jr. wrote that “Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny.” Disability is a part of the human condition that will affect all Americans, directly or indirectly, at some point in their lives. We all must thus continue to struggle to remove barriers that deny people with disabilities basic rights to dignity, equality, and opportunity.
Laurence Paradis
Executive Director
Disability Rights Advocates
CONTENTS
Introduction by Danny Glover 1
Chapter 1: Access to Health Care & Health Insurance 3
Chapter 2: Mental Health & Disability 27
Chapter 3: Learning Disabilities 49
Chapter 4: Employment & Earnings 69
Chapter 5: Technology & Disability 83
INTRODUCTION
From the Desk of Danny Glover
Dear Friends,
The facts in Disability Watch, Volume 2 reflect a critical moment in the effort to make the situation of people with disabilities an integral part of our nation’s social agenda. In every area so meticulously covered in this work—employment, access to technology, health care and insurance, and the special problems of those with hidden disabilities such as mental illness and learning disabilities, we see a political and social movement which has reached a new level of maturity.
In some areas, like employment, progress has been painfully slow. In other areas, such as technology, there seem to be promising developments almost weekly. And, in many cases, increased acceptance of people with disabilities has gone hand in hand with resistance and a backlash based on ignorance. Social movements often seem to follow their own laws of physics— for every two steps forward, there is counter-movement which results in one step backward. How, then, can we build upon the gains so far achieved?
Substantial future progress will very much depend on the ability of the disability rights movement to form partnerships with other civil rights and social movements. People with disabilities cannot and should not any longer attempt to go it alone. As this issue of Disability Watch amply demonstrates, the disability community shares many of its objectives with other movements for civil and human rights. Children with learning disabilities, students who use English as a second language, and marginalized African-American students should be working together to avoid the damage that can be done to all of them by the overzealous application of high-stakes testing in our nation’s public schools. Women’s groups, disability organizations, and civil rights activists from communities of color have a common interest in insisting on better medical care for their communities. Aging baby-boomers, knowing that disability rates rise sharply with age, will increasingly see that the problems facing our senior citizens have much in common with these long confronted by the disability community. Disability groups have not done enough to combine forces with more traditional activist groups. This is a two-way street. Organizations representing the elderly, women, and racial minorities have in turn underestimated the extent to which disability issues are central to their objectives and could be made part of their agenda. Building these bridges will be hard work, but it represents the next great leap forward. When the passion, commitment, and personal experiences of leaders with disabilities are joined with the organizational strengths, political skills, and shared resources of organizations like the AARP, La Raza, NOW, and the NAACP, how much more can be accomplished on all fronts?
This issue of Disability Watch tells us about profound progress for men, women, and children with disabilities, but it also shows us how far we have to go. Having a hidden disability myself, dyslexia, I am a strong advocate of rights for people with disabilities. It is my sincere hope that we can all come together to make a difference and improve our communities for all.
Warm regards,
Danny Glover
CHAPTER 1
ACCESS TO HEALTH CARE & INSURANCE
Far too often, people with disabilities cannot get the high-quality health care they need. When their insurance doesn’t cover treatment for a pre-existing condition, when they are denied insurance coverage altogether because of their disability, when they cannot afford to buy medicine or see a specialist, they go without treatment. When they are forced to rely on public insurance, especially Medicaid, the quality of their care often suffers. Aside from financial and insurance barriers, they must face an array of other barriers to the kind of comprehensive care that most Americans take for granted: attitudinal barriers, which prevent health care providers from seeing them as individuals with unique needs; physical barriers, which can deny them access to a doctor’s office or to a thorough medical examination; and communication barriers, which can prevent doctor and patient from understanding each other well enough for adequate diagnosis and treatment. These barriers limit access not only to treatments related to disability, but also to routine, preventive medicine that can be so essential in keeping a person healthy.
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Key Points: Access to Health Care & Health Insurance
- People with disabilities are significantly less likely than their non-disabled counterparts to be satisfied with the quality of the health care they receive.
- One-sixth of the non-elderly population with disabilities lack any kind of health insurance.
- Children with disabilities who have health insurance see the doctor 64% more often than those without insurance; among working-age adults with disabilities, those with insurance see the doctor 61% more often than those who are uninsured.
- People with disabilities are less likely to be covered by private insurance, and more likely to be covered under public programs, than their counterparts without disabilities.
- People with disabilities rate their quality of care significantly higher when they have private health insurance than when they rely solely on public insurance programs, especially Medicaid.
- People with disabilities are often denied private insurance coverage, or are asked to pay exorbitant premiums, because of their disabilities.
- Private insurance plans generally offer mental health benefits on a much more restricted basis than physical health benefits; many provide no mental health coverage at all.
- Even when they offer mental health benefits, many insurers routinely deny physician referrals for mental health services, often with serious consequences for the patient’s health.
- Inaccessible diagnostic equipment and examination tables often impede access to routine, preventive health care for many people who are limited in mobility.
- Communication barriers impede access to comprehensive health care for many people with hearing impairments.
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Barriers to quality health care for people with disabilities
Most Americans rate our health care system quite highly. But people with disabilities, the consumers with the greatest exposure to health care, are more likely than non-disabled people to express displeasure with that system. In a 2000 Harris poll, one-quarter (26%) of people with disabilities reported that they were either “somewhat dissatisfied” or “very dissatisfied” with the quality of the health care they and their families received. This figure compares with only 16% of people without disabilities expressing dissatisfaction.
Traditional medical training places little emphasis on dealing with disability, offering inadequate clinical experience to prepare medical students to provide comprehensive and culturally competent care for people with disabilities. As a consequence, patients with disabilities are often paired with health care providers who are ill-prepared to treat their conditions or who see only the disability at the expense of broader health concerns. These providers are less likely to understand the connection between patients’ disabilities and other aspects of their overall physical and mental health; as a consequence, there is a greater risk that these patients will not receive the full range of appropriate health services.
Doctors who are inexperienced with disability are more likely to have negative feelings about treating patients with disabilities, viewing them with a mixture of discomfort and annoyance and falling back on stereotypes during their interactions. Providers and support staff often treat such patients as inconvenient, second-class citizens. When faced with attitudes like these, it is not surprising that many people with disabilities report less than satisfactory experiences in health care settings.
Beyond these attitudinal problems, people with disabilities experience other significant obstacles to obtaining quality health care. People with mobility limitations often face architectural and other physical barriers that render doctors’ offices and certain types of diagnostic equipment inaccessible to them. Communication barriers can hinder doctor-patient interactions for those with hearing or speech impairments; blind people often cannot obtain medical information in accessible formats. These physical and communication barriers are discussed in more detail later in this chapter.
Access to Health Insurance
For the disability population as a whole—as for other Americans—one of the principal factors that can facilitate or hinder access to medical treatment is the availability of health insurance. Except among the very wealthy, the country’s best health care can only be obtained with the help of private health insurance plans. But, for a variety of reasons, people with disabilities are often unable to obtain or to afford such plans, and they therefore must rely on public insurance programs, when they are eligible, or go with- out insurance altogether. Uninsured Americans face significant obstacles to obtaining health care, and the care they obtain is often inferior; those with disabilities, who have greater need for care but less money to pay for it, are the most dramatically affected by lack of access to care. People with disabilities whose health insurance comes from public sources—especially non-elderly persons who are generally ineligible for Medicare coverage—also cannot always secure the best possible treatment when they need it.
Thus, private insurance is crucial in obtaining quality health care for people with disabilities. But insurance companies often go out of their way to exclude people with disabilities from their coverage pools, to restrict their coverage so as to exclude the very conditions that cause disability, or to make coverage unaffordable by charging unjustifiably exorbitant rates. Denial of access to private health insurance is a significant problem in the lives of many people with disabilities, one that directly affects their ability to survive and to thrive.
Uninsured people with disabilities can’t get the health care they need
One-sixth (17%) of the non-elderly population with disabilities lack any kind of health insurance, according to data from the 1995 National Health Interview Survey (NHIS). These 4.1 million people with disabilities must pay for health care out of pocket, try to obtain free care, or forego treatment altogether. Although people with and without disabilities have the same rate of uninsurance, the consequences of this lack of insurance are far more dramatic for people with disabilities than for those without.
People with disabilities have a much greater need for health services, and they also tend to be poorer. The median family income for uninsured, working-age adults with disabilities was only about $15,500 in 1995, compared to $22,500 for those without disabilities. This income level leaves very little cash for out-of-pocket expenditures on health care, yet is generally too high to make a person eligible for Medicaid and other public-assistance programs. As a result, uninsured people with disabilities often need health care that they cannot get. About half (48%) of the uninsured population with disabilities experience unmet health care needs annually, according to survey data — they go without needed care, delay seeking it because of the cost, or are unable to afford the prescription medications they need. This figure compares to a much smaller 20% of the uninsured population without disabilities who have unmet need.
People covered by a health plan, whether public or private, are much less likely than those lacking insurance to have unmet health care needs. Some 20% of people with disabilities who have public insurance and 15% of those who have private insurance report that they either delayed seeking care or went without. These figures are about three times as high as those for the non-disabled population (6% and 5%, respectively).
Health care utilization is substantially lower among the uninsured. Children with disabilities who have any kind of health insurance see the doctor 64% more often than those without insurance (8.5 versus 5.2 times a year, on average). Among working-age adults, the average number of physician contacts is 61% higher for those with insurance than for those without.
Health insurance coverage: private is generally better than public
People with disabilities are less likely to be covered by private insurance than their counterparts without disabilities. Just over half (55%) of non-elderly Americans with disabilities are covered by private insurance plans, compared to a much larger share (73%) of the non-disabled population.
The slack is taken up by public insurance programs, which cover 28% of the non-elderly population with disabilities who are not covered by private insurance. The vast majority (70%) of this group are on Medicaid, a public-assistance health care program administered by the states and available to people living in or near poverty. Medicare, which provides health coverage for non-elderly persons with work histories who are unable to work, covers many of the rest; some are covered under both Medicaid and Medicare. Relatively small groups are covered by military health programs, other public assistance programs, or the Indian Health Service.
Whether a person’s health insurance comes from a private company or a public program significantly affects the availability and quality of care. As mentioned above, unmet health care need is greater among working-age adults participating in public programs (20%) than among those with private insurance (15%). People with disabilities also rate the quality of the health care they receive less highly when they rely on public health insurance than when they are covered by a private plan. Only 45% of those using public insurance programs report that they receive excellent care from their usual provider, compared to 54% of those with private coverage.
People on Medicaid have the lowest level of satisfaction, with only 40% of those who rely solely on this program rating their care as excellent, compared to 49% of those who depend on Medicare alone. Uninsured people with disabilities rate their quality of care at about the same low level as those on Medicaid, with 43% reporting excellent care.
People with disabilities have limited access to private health insurance
Although private insurance coverage usually provides the best access to care for people with disabilities, many are unable to obtain it. Private insurance is principally obtained through group plans, which are offered by employers or trade unions to their employees or members. Often, these plans are subsidized or even free to the employee. But most working-age people with disabilities don’t have jobs, and are therefore ineligible for such plans. Others have part-time, temporary, or low-paying jobs that don’t come with insurance benefits.
The other option for private insurance— individual plans—is also out of reach for many people with disabilities. Insurance companies often deny coverage to people with disabilities, or they offer coverage far too costly to be affordable to most people with disabilities. And when coverage can be obtained, “pre-existing conditions” are often excluded—the very conditions that cause disability, often those for which insurance coverage is most essential.
Employment-based group insurance plans
Group health insurance plans are usually the best insurance option, regardless of disability status. These plans tend to offer better coverage than individual plans at lower cost, particularly when employers subsidize the premiums as a benefit of employment. Group health insurance is generally available to people with disabilities only if they have a full-time job themselves, have a spouse or parent with a full-time job, or have benefits carried over from previous employment.
Because the majority of working-age adults with disabilities do not have jobs (see Chapter 4), many have no access to employment-based health insurance. Those who do work often have low-paying jobs that do not include benefits; others are able to work only part time because of their health. Data from the Bureau of Labor Statistics indicate that, in 1997, only 31% of part-time workers were eligible for coverage from their employer’s health plan, compared to 82% of full-time workers. Thus, even if many of those with disabilities who do not have jobs were to gain part-time employment, they would not greatly improve their access to group health coverage.
Although the vast majority (70%) of non-disabled working-age adults have employment-based group health insurance, only half (50%) of those with disabilities are covered under group plans. Less than a third (31%) have coverage in their own name, based on current or former employment. The others (19%) get their group coverage through a family member, usually a spouse. Because group health plans generally cover only the employed person’s spouse and dependent children, unmarried adults are generally ineligible. As a result, only one-third (34%) of unmarried, working-age adults with disabilities have group health coverage.
Recent federal legislation has lowered barriers to obtaining health care for people with disabilities who are eligible for group health insurance. The 1996 Health Insurance Portability and Accountability Act (HIPAA) outlaws certain practices that formerly discriminated against workers with disabilities in employment-based insurance. If an employer offers health benefits, they must be offered to all eligible workers, without regard to health status; thus, people with disabilities can no longer be denied this important benefit of employment. And, if employees are required to pay part or all of the premium, the payment can be no higher for workers with disabilities than for those without.
Although it is still legal to exclude coverage of pre-existing health conditions, HIPAA limits the period of exclusion to twelve months. Thus, after an initial waiting period, a person with a disability will receive the same full insurance coverage as his or her co-workers. This change will mean that people with disabilities who want to switch jobs can do so without having to worry about losing key portions of their health benefits over the long-term.
Even aside from the legal requirements, the pre-existing condition exclusion is becoming less of a problem for some workers with disabilities. According to the General Accounting Office (GAO), group plans offered by large and medium- size businesses are now much less likely to make any restriction at all on benefits for pre-existing conditions. In a recent Cornell University survey of human resources managers, 87% of companies reported that their insurer neither denied coverage to employees with disabilities nor imposed limitations or exclusions.
Individual policies—denial and exclusion are commonplace
For the large fraction of people with disabilities who are not eligible for employment-based group plans, the private insurance picture is far more bleak. HIPAA has relatively little impact on individual health insurance policies (except that it requires insurers to offer individual policies to certain people who were formerly insured under employment-based group plans; as noted below, these conversion policies are often prohibitively expensive). And only a few states require insurers to offer coverage to individual applicants with disabilities on the same basis as those without disabilities. The result is that private, individual health insurance is unavailable to many people with disabilities, either because of outright denials or because the inflated premiums are unaffordable. Often, policies that are available are useless for people with disabilities because disability-related conditions are excluded from coverage.
An analysis of the 1995 National Health Interview Survey reveals that 1.3 million non-elderly Americans with disabilities had been denied access to private health insurance coverage during the previous two-year period. More specifically, 800,000 people had applied for coverage but were unable to get it, and 1.0 million insured people had experienced problems with coverage limitations due to a pre-existing condition. Of those who’d applied for coverage but had been turned down, 550,000 were aware that a pre-existing condition or health risk was the reason for denial.
Among people with private insurance, those who have individual policies are much more likely to have access problems than those with group plans. During the two years prior to the survey, 13% of those currently covered under individual policies had been turned down or offered restricted or limited coverage, compared to 4% of those with group coverage.
According to a 1996 report from the GAO, some insurers deny coverage to about one-third of applicants for individual health insurance policies, based on medical history and health status. Averaging over all states, excluding the few that prohibit insurers from denying coverage based on medical history, the insurers the GAO interviewed exclude about 18% of their applicants. Even children are not immune. A separate, 1998 GAO survey found that insurers typically denied coverage to between 5% and 15% of applicants under the age of 18. These figures underestimate the extent of the problem, because insurance agents routinely dissuade clients with disabilities from applying for health insurance when they know that the carrier does not welcome people with disabilities as customers.
The GAO found that, except when prohibited from doing so by state laws, insurers “virtually always” deny coverage altogether to people who have HIV or AIDS, heart disease, or leukemia. People with rheumatoid arthritis, Parkinson’s disease, diabetes, or Down syndrome are generally refused health insurance. Children with autism, cystic fibrosis, anorexia or bulimia, HIV, leukemia, or muscular dystrophy are generally denied coverage; many insurers refuse to cover kids with epilepsy, emotional disorders, juvenile diabetes, or cerebral palsy.
When coverage is offered to people with disabilities, it often comes with a catch: Either the policy includes a rider that excludes coverage for the applicant’s pre-existing conditions, or the policy is offered at a premium significantly higher than that for ordinary policies, or both. Exclusion riders, which often deny benefits for the specified conditions for as long as the policy is in effect, are separate from the ordinary pre-existing condition exclusions often found in individual policies, which usually apply only for a relatively short period of time. The GAO found that insurers had added riders to exclude such conditions as asthma, cleft palate, glaucoma, ulcers, and varicose veins. Conditions that resulted in a higher premium included attention deficit disorder, anemia, controlled hypertension, and mild arteriosclerosis. People who were overweight were also offered policies at a significantly higher premium.
Although the GAO mentions only a few specific conditions, it is clear from the National Health Interview Survey data that lack of access to private health insurance is a problem affecting the entire spectrum of people with disabilities. Common health conditions and impairments reported by those who’d been denied access to full coverage include heart disease, back problems and various other orthopedic impairments, mental health conditions, arthritis, asthma, nervous system disorders, diabetes, and cancer. About one-half million people with mobility impairments report coverage denials and exclusions, as do a quarter- million people with mental health disabilities and just under a quarter-million with visual impairments.
The population with mental health–related disabilities deserves particular attention, since it is the disability group with the largest unmet need for overall health care, with 37% reporting either that they went without needed care during the previous year or that they delayed seeking treatment because of concerns over the cost. Not coincidentally, this is also one of the populations least likely to be covered by private insurance plans, with only 41% covered. Based on outmoded stereotypes of mental health conditions, dating from a time before effective treatments became available, insurers have made it very difficult for people with mental health disabilities to obtain private insurance. Specific problems with access to mental health treatment are discussed below
When coverage is offered, premiums are often unaffordable
According to data from the 1995 NHIS, the main reason that people with disabilities lack health insurance is cost: More than three-quarters (77%) of those without insurance say that they cannot afford the premiuMs. The cost of health insurance coverage is of paramount importance to people with disabilities who are ineligible for group insurance coverage, a population short on financial resources who are nonetheless asked to pay disproportionately high premiums for health insurance.
Working-age people with disabilities who have individual insurance policies have a median annual family income of $22,500, much lower than the $37,500 figure for people without disabilities who have individual plans. Uninsured working-age people with disabilities have a still lower family income of only about $15,500. Children with disabilities who are uninsured fare slightly better, with an average family income of $18,500.
People with disabilities who must rely on individual health coverage pay much higher premiums than the typical non-disabled American. The problem is two-fold. First, because people with disabilities are often ineligible for group coverage, they are forced to apply for individual plans, which are generally more expensive. Second, when insurers offer individual policies to people with disabilities at all, they often charge premiums that are far higher than those paid by their customers without disabilities.
Individual insurance policies are generally much more costly to the consumer than group health plans, in part because those plans are often subsidized by employers. While a majority of people without disabilities who had group coverage paid monthly premiums of under $50 in 1995 (according to NHIS data), with more than one-third (35%) paying nothing, two-thirds of those who had individual plans paid at least $100 per month, with 41% paying over $200 monthly.
That $200 typical premium rises considerably once the insurer takes the disabling health condition into account. In states that have neither high-risk insurance pools (see below) nor laws requiring insurers to provide coverage without regard to health status, insurers charge individual applicants with disabilities premiums that are well in excess of their standard rates. In a 1999 survey of insurers offering HIPAA-mandated individual policies to people formerly covered under employment-based group plans, the GAO found that some carriers charged applicants with disabilities more than 4.5 times their usual premium. More typical were premiums twice or three times as high as those charged an applicant without a disability. One insurer wanted $950 per month to cover a person with juvenile-onset diabetes—for a single person, not a family! Since median family income among uninsured working-age people with disabilities is a mere $1300 per month, according to 1995 NHIS data, these wildly inflated premiums put health insurance well beyond the reach of most of this group.
Residents of the 22 states with so-called high-risk insurance pools fare somewhat better. Those states cap the premiums that consumers with disabilities can be charged at a maximum of twice the standard rate (in several states, the cap is smaller, at 1.5 times the standard rate or less). Applicants are typically charged premiums of $180 to $300 per month for coverage of a single person with a disability.
Only three states require insurers to charge the same premium to all applicants, without regard to disability or health status. In these states, at least, uninsured people with disabilities have a reasonable chance of obtaining health insurance they can afford.
Many more states, however, have statutes requiring insurance companies to have a sound actuarial basis for premiums charged.
A California case, Howard Chabner v. United of Omaha Life Insurance Company, challenged an insurance company’s practice of charging people with disabilities inflated rates that were not based on actuarial data or experience. In that case, Mr. Chabner, who has muscular dystrophy, was charged twice the standard premium, on the basis of his disability, for life insurance. The Court of Appeals held that a California law, which is similar to laws in many other states, required the insurance company to have an actuarial basis for the double premium. Finding that the company had no such basis, the court concluded that Mr. Chabner had been discriminated against and was therefore entitled to a standard insurance policy.
The Chabner case makes clear that, in states with laws similar to the California law, insurance companies will need to demonstrate that there is an actuarial basis for charging a person with a disability a higher premium than a non-disabled individual.
Access to mental health services
People who need mental health services can’t always get them
Although mental health treatment can be just as important in saving and improving lives as treatment for physical ailments, access to mental health services is not always available, even for people who have insurance. Some private health insurance plans don’t cover mental health care at all. Others treat it as a separate benefit, with higher co-payments, caps on lifetime usage, or strict limits on the number of outpatient visits allowed per year. Uninsured people may be discouraged from spending scarce financial resources on treatments viewed by family members as unnecessary, even though such treatments may enable them to lead normal lives.
Non-elderly adults with mental health disabilities (defined in Chapter 2) report significant levels of unmet need for mental health services. Overall, 12% said they were unable to get the mental health care they needed during the year prior to the interview, according to data from the 1995 NHIS. Over one-quarter (27%) of uninsured working-age adults with mental health disabilities have unmet need for mental health care, compared to 8% of those with insurance, either public or private.
Children with mental health disabilities had lower levels of unmet need for mental health care, averaging 5%. Some 13% of those who were uninsured were unable to get needed services during the year prior to the interview; 5% of those relying on public insurance had unmet need, as did 2% of those with private insurance. Elderly people with mental health disabilities rarely report unmet need (1% across insurance categories), in part because most are eligible for Medicare and very few are uninsured.
The need for parity in mental health benefits
There is no good reason for insurers to treat mental and physical conditions differently. This division between physical and mental health care is artificial and outmoded, dating from a time before it was understood that the causes of many severe mental health problems could be traced to disorders of a physical organ, the brain. As society’s understanding of mental health and its connection to overall health has advanced, people with mental health conditions have sought equality in the provision of mental health services. In particular, advocates have urged insurers to offer benefits for mental health care on the same footing as physical care, instead of imposing policies aimed at rationing treatment. Such policies typically include requiring the consumer to pay a higher co-payment, limiting the number of mental health visits per year, limiting coverage to a low lifetime benefit cap, and routinely denying referrals from physicians to mental health professionals.
Federal legislation has aimed to reduce the disparity between mental and physical health coverage. The weak Mental Health Parity Act of 1996 attempted to do so only half-heartedly, prohibiting insurers from imposing a lower lifetime maximum for mental health benefits than for medical and surgical benefits, but the restriction only applies to medium- and large-business group plans that offer mental health benefits, something they are not required to do under this or any other law. Insurers can still limit mental health benefits in other ways, and they can exempt themselves from the law if the increased lifetime benefit results in a cost increase of more than a measly 1%.
In a May 2000 report, the General Accounting Office found that the vast majority of group insurance plans continue to offer mental health coverage on a much more limited basis than other forms of health coverage. A GAO survey of employers covered under the Mental Health Parity Act (but not further regulated under state law; see below) reveals that, although 86% of insurance plans do conform to the letter of the law, an overwhelming majority (87%) of compliant plans fail to offer mental health benefits on an equal basis with other health benefits. Among employers whose plans had been changed since 1996 to comply with the law, most (65%) had imposed some other restriction on mental health coverage, as a substitute for the annual or lifetime limits that are no longer permitted.
In general, two-thirds (66%) of employment-based insurance plans place a stricter limit on outpatient mental health visits—typically to 20 visits per year—than on outpatient visits for other health problems, which are typically unlimited. A similar two-thirds (65%) of plans limit inpatient mental health treatment, typically to 30 hospital days per year; hospitalizations for other reasons, in contrast, are not usually limited to a set number of days per year.
Co-insurance rates (the proportion of the cost borne by the client) are higher for mental health treatment in one-quarter (25%) of insurance plans, typically 50% compared to 20% for medical and surgical benefits. Higher co-payments are required for mental health treatment by 27% of plans.
Overall, 89% of employers offer health plans that fail to provide full parity between mental health coverage and other health coverage, either because they continue to impose annual or lifetime limits in defiance of the Mental Health Parity Act or because they use other methods of limiting mental health coverage. Excluded from these statistics are employers in states with laws imposing more stringent mental health parity requirements. Of the 43 states that have passed some form of legislation dealing with this issue, 16 require full parity for mental health benefits, according to the GAO, and an additional 13 have provisions that go beyond current federal law in some way. For example, some states allow plans to limit inpatient mental health treatment, but set the minimum limit at 30 hospital days. Many states mandate some form of mental health coverage, something no current or proposed federal legislation has achieved.
The proposed Mental Health Equitable Treatment Act, a significant improvement over the previous legislation, would require true parity in benefits for severe mental health conditions, such as schizophrenia and bipolar disorder. But insurers that don’t offer mental health benefits at all would remain exempt, and the law doesn’t apply to individual policies or to group plans for small business of fewer than 25 employees. This proposed law has been introduced in the Senate and referred to committee for consideration.
Mental health parity increases insurance rates only very slightly, if at all. Estimates from various sources cited by the GAO project a modest 2% to 4% increase in health insurance costs if plans were to offer full mental health parity. As for the limited parity required under the Mental Health Parity Act, very few (3%) of the employers surveyed by the GAO had noticed any increase in plan costs due to compliance with the law; hardly any (1%) had filed for an exemption under the law, citing increases of 1% or more in health insurance costs.
The consequences of denied coverage can be serious
When insurance plans do cover mental health care, insurers often attempt to cut costs by rationing or restricting access to these benefits, much to the detriment of the consumer’s health. Under managed-care plans, insurers limit mental health benefits by requiring patients to first convince a primary care physician of the seriousness of their condition, then obtain a referral from the physician, and then wait while the insurer decides whether the need for treatment is great enough to qualify for coverage.
Insurers routinely deny referrals for mental health care, even when the referring doctor is firmly convinced of the need for treatment, according to a recent survey of physicians by the Kaiser Family Foundation and the Harvard University School of Public Health. Of surveyed physicians whose practices included referring patients to mental health professionals, a significant majority (58%) had seen those referrals denied by the patient’s health plan. More than one-quarter of the doctors (27%) said that these health-plan denials occurred at least once a month.
The consequences of insurers’ reluctance to provide mental health benefits are often serious. According to the physicians surveyed, refusal of mental health treatment resulted in a somewhat or very serious decline in the patient’s condition nearly three-quarters (72%) of the time. Although the physicians also saw declines due to denial of other services, lack of mental health treatment was by far the most likely to harm the patient’s overall condition.
The following are some specific cases reported by the physicians:
- a suicide resulting from a prematurely terminated alcoholism treatment
- the dissolution of a marriage due to lack of family counseling
- denial of needed inpatient treatment for a serious eating disorder
- denial of treatment for depression and suicidal tendencies
- academic failure of a child denied treatment for attention deficit hyperactivity disorder and behavioral problems
- loss of employment and imprisonment of a patient denied treatment for addiction.
Thus, people with mental health disabilities remain extremely vulnerable even when they have insurance that is supposed to cover mental health care.
Physical and communication barriers to quality health care
Physical and communication barriers impede access to health care for many people with disabilities. Physical access barriers, including both inaccessible buildings and inaccessible diagnostic equipment, particularly affect those with mobility impairments. Communication barriers affect deaf people, especially when they are denied access to sign-language interpreters, as well as blind people, when they are not provided with patient literature in alternative formats.
Physical access barriers confronting those limited in mobility
Despite the equal-access requirements of the ADA—as well as the Rehabilitation Act, which applies to hospitals and other institutions receiving federal funding—people with mobility impairments, and in particular those using wheelchairs, often encounter architectural barriers that prevent them from entering or using a doctor’s office, a health clinic, or even parts of a hospital. Deplorable though they are, these obvious barriers are only part of the problem confronting people with severe mobility limitations when they try to obtain comprehensive health care.
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Life and long-term-care insurance
People with disabilities are denied access not only to health insurance, but to other forms of insurance as well: Application forms for life insurance and for long-term-care insurance routinely ask very specific questions about health conditions and impairments, and a “yes” to any of them can result in either denial of coverage or a highly inflated premium. The insurance companies’ practices are often based not on solid actuarial data, but on outmoded, uninformed notions of the dire consequences of disability. A person with epilepsy, for example, or someone with bipolar disorder controlled by medication, is unlikely to experience a greater risk of mortality or of entering a nursing home than a person without a disability. But people affected by these conditions, along with a host of other causes of disability, find it difficult or impossible to obtain these forms of insurance.
In addition to offering a measure of financial security to surviving family members, life insurance is often used as a relatively safe form of investment. When they cannot obtain life insurance at all, or when they are asked to pay exorbitant rates for insurance, people with disabilities are denied both of these opportunities. Long-term-care insurance, which pays for nursing home care as well as community-based alternatives, is another strategy used to protect assets, which would otherwise be eaten up if such services were to become necessary. Again, people with disabilities are denied this avenue to financial security when they are refused coverage.
The Americans with Disabilities Act, along with various state laws governing insurance practices, requires fair treatment of applicants with disabilities, with premiums based on statistics rather than prejudice. Insurers, who often lack reliable data on populations with disabilities, must not simply refuse coverage or charge outlandish rates based on misconceptions and profit motives. Instead, they must find other ways to manage risks while still offering comprehensive policies at reasonable prices.
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Inaccessible diagnostic equipment and examination tables significantly reduce access to routine, preventive health care for many people who are limited in mobility. Data from the 1998 National Health Interview Survey highlight two important indicators of reduced quality of care for this population: The survey reveals that women with severe mobility impairments are much less likely to receive mammograms and pap smears than their counterparts without disabilities. Of women between the ages of 40 and 69 who had seen a physician for a routine physical exam during the two years prior to the interview, only half (51%) of those with severe mobility limitations had been given a mammogram during that time, compared to more than three-quarters (78%) of those without mobility limitations. The problem is with the equipment: Most mammography machines require that a person be standing upright while the X-ray is taken; when a woman cannot do so, this essential diagnostic procedure is often skipped. As a result, the risk of undiagnosed breast cancer is greater among these women.
The pap smear test, a recommended diagnostic procedure for early detection of cervical cancer, is another important part of the examination that is often neglected when the patient cannot transfer onto an exam table because it is inaccessible. Of women between 18 and 64 years of age who’d had a checkup during the prior two years, 65% of those with severe mobility limitations reported having a pap smear during that time, compared to 86% of those without mobility limitations. Again, the health of these women with disabilities is being put at risk because the opportunity for early diagnosis of a life-threatening disease is being missed.
Accessible mammography machines are readily available, yet few hospitals and health clinics have chosen to buy them. Many practitioners try to make use of ordinary equipment, but these machines can at best provide only a partial image of a seated woman’s breasts. Accessible examination tables are also easily obtained, and at reasonable cost—up to $3,000 compared to about $2,000 for a fully adjustable table that is inaccessible. When no such tables are available, patients often ask for assistance in getting up onto a too-high surface, but these requests are often refused, or the help given is begrudging or inadequate.
Even the most basic part of the examination can pose problems. Hospitals and doctors’ offices hardly ever have wheelchair-accessible scales, even though they can be purchased retail for only $200. As a result, physicians cannot monitor the weight of their patients who use wheelchairs, nor can they accurately calculate dosages for weight-dependent medications.
Communication barriers affect those with sensory impairments
Communication barriers confront many people with hearing impairments when seeking health care. In particular, deaf people who use sign language as their primary means of communication are often denied access to a qualified signer when they visit a doctor’s office or hospital. Instead, they are forced to interact with medical professionals via written notes, lipreading, or friends or family members who act as interpreters—methods that often prove ineffective, inaccurate, or embarrassing to the patient. A recent survey of doctors found that the vast majority (78%) failed to use sign language as the primary means of communicating with their deaf patients; another study showed that deaf people who were able to communicate with medical staff through sign language were more likely to undergo routine, recommended examinations and were much more likely to be satisfied with their medical care.
Data from the Disability Followback Survey, a 1994–97 government survey of Americans with disabilities, indicate significantly lower levels of satisfaction with certain key aspects of health care among deaf people, reflecting problems in communication between doctor and patient. Only 30% of deaf people rated the thoroughness of examinations provided by their usual doctor as “excellent,” compared to 42% of their counterparts without hearing impairments. And only 35% of deaf patients said that their doctor’s respect for their privacy was excellent, compared to 48% of non-hearing-impaired people interviewed in the survey.
Other disability groups reporting relatively low levels of satisfaction with these aspects of health care are people with mental retardation and those with learning disabilities. Only 34% of both groups rate their doctor’s thoroughness as excellent (compared to 42% of all survey participants), and only 37% of those with mental retardation and 39% of those with learning disabilities gave top marks to the doctor’s respect for their privacy (vs. 47% of all persons interviewed). Difficulties in communication are probably to blame here as well. Physicians do not always make the effort to explain procedures and diagnoses in a way that is completely understandable to a patient with a cognitive disability.
People with visual impairments are another group facing communication difficulties. Material handed out to patients is rarely offered in alternative formats, such as Braille, large print, and computer diskette, leaving these patients with an incomplete understanding of their diagnosis or treatment, or of the preventive measures they need to take.
Conclusions
The needs of Americans with disabilities are not well satisfied by the country’s health care system. The barriers are largely financial, but architectural and communication barriers are also significant. People with disabilities experience high levels of dissatisfaction and unmet need for health care, especially when they lack health insurance, or when they must rely on public assistance programs. Those with inadequate health insurance utilize the health care system much less often, at the expense of worsening health and reduced independence. When they are able to secure care, they are likely to require more intensive treatment than would have been needed had they been able to obtain prompt diagnosis and treatment.
In terms of financial barriers, private health insurance offers the best solution, but it can be very difficult for people with disabilities to obtain. Those lacking good jobs are often ineligible for the best coverage, which is generally available through employment-based group plans. And insurance companies do their best to avoid covering people with disabilities under individual and family plans by denying coverage altogether, restricting coverage, or offering insurance only at ridiculously high premiums, often without the support of actuarial data. Although recent federal legislation has made it more difficult for group health insurers to discriminate against people with disabilities, it has done little to guarantee fair treatment for those who have or are seeking individual coverage. And it has done virtually nothing to regulate the mix of benefits available to those who are able to secure insurance.
Under the admirable philosophy that the cost of health insurance should be spread over society as a whole, a few states require insurers to offer individual coverage without regard to the health or disability status of the applicant. More states should follow their lead. Others have instituted high-risk pools for people who cannot otherwise obtain private coverage; for those who can afford them, these plans offer semi-reasonable rates and provide a practical solution to the problem of blanket coverage denials. Requiring insurers to accept people with disabilities, however, will not suffice. More must be done to restrict the use of pre-existing condition exclusions and caps on coverage, so that those who are insured will have the access to health care that they need. And greater oversight is needed to make certain that insurers do not delay or deny care that should be covered.
Treatment for mental health problems is often restricted or excluded under insurance plans. Managed-care administrators routinely deny referrals, despite sound medical opinions regarding their necessity. As a result, people with mental health disabilities often have difficulty getting treatment. Because there is no rational basis for treating these disorders any differently from physical illnesses, insurers should be required to offer the same levels and mechanisms of coverage for mental as for physical health conditions.
Finally, physical and communication barriers significantly limit full access to quality health care for certain segments of the disability community. People with severe mobility impairments are particularly affected by physical access barriers, which prevent them from undergoing key diagnostic tests when accessible examination equipment is unavailable. People with sensory and cognitive limitations often face communication barriers to effective interactions with medical personnel, resulting in treatment that is less comprehensive and less respectful of the patient’s privacy. People with hearing impairments are particularly subject to problems in this area. Hospitals, clinics, and individual practitioners must go to greater lengths to ensure that their patients with disabilities receive the same high-quality care as their non-disabled patients, including routine examinations and diagnostic procedures that are comprehensive, fully understood by the patient, and private.
PROFILES
Johnnie Lacy, former executive director of Community Resources for Independent Living in Hayward, California, has good reason to complain about the substandard health care she’s received over the years. “Care is diminished by lack of accessibility,” she says. “If you have a mobility limitation, a lot of things get missed along the way.” Important things like getting weighed, receiving a mammogram, or having a gynecological exam.
Johnnie has not been weighed for decades, despite the diabetes and hypertension that make the monitoring of her weight critical to her future health. Her local health care facility has no scale to weigh a person sitting in a wheelchair.
Similarly, there are no accessible exam tables—ones that can be adjusted so that a person can transfer onto the table from a wheelchair—which means that routine physical examinations that require the patient to lie on a table get skipped, or are carried out in a perfunctory way. And there are no accessible mammography machines that would allow X-rays to be taken from a seated position. Staff are not trained in how to treat patients who use wheelchairs, Johnnie reports. When confronted with a patient who cannot use the equipment because it is inaccessible, they do not know how to handle the situation. “I’ve been injured by people trying to lift me by pulling on my arm, which is very fragile due to polio.”
Still more troubling is the lack of sensitivity on the part of doctors and other staff members. Johnnie was once kept waiting in the emergency room while an EKG technician complained loudly, in her presence, about having to lift her onto the equipment; help arrived well over half an hour later. And she is often faced with the frustration of dealing with providers who believe that, having seen a few patients in wheelchairs before, they understand her situation better than she does. “They think all people in wheelchairs are the same,” Johnnie says.
Abigail Peterson, a five-year-old who lives in Petaluma, California, was born without developed fingers on her left hand. She has no significant health problems, nor does she have any other impairments. Her hand requires no treatment or special care. Abigail would seem like the sort of healthy child that a health insurer would welcome onto its rolls, but her family’s insurance carrier, like many insurers who routinely deny coverage to individuals with disabilities, refused to provide comprehensive, affordable coverage for her.
When Abigail’s parents applied for family health coverage from Blue Cross of California, the insurer balked. Although they readily agreed to provide standard coverage to the rest of her family, they refused to do so in Abigail’s case—even though Abigail’s pediatrician had assured them of her good health, and her parents had agreed to waive coverage of any future treatment involving her hand. Instead, Blue Cross referred her to a state-subsidized plan for individuals deemed uninsurable, offering Abigail only a less comprehensive plan while she waited for state-sponsored coverage. Her family could not afford the much higher premiums for this inferior interim plan, so Abigail remained uninsured.
Abigail’s parents continued to push for their daughter to be included in their family health plan, but the insurer did not change its position. Only after a lawsuit was filed against them did Blue Cross agree to offer Abigail the same level of coverage, at the same cost, as any healthy child without a disability would receive.
DATA SOURCES: Chapter 1
Much of the data presented in this chapter come from Disability Statistics Center analyses conducted by the author for this report: An analysis of the 1995 National Health Interview Survey is the source of data on health insurance status, type of private plan coverage, denial of insurance benefits, reasons for lack of coverage, unmet need for health care, cost of health insurance premiums, satisfaction with health care, and family income of people with disabilities. An analysis of the 1998 National Health Interview Survey is the source of data on lower rates of mammograms and pap smears given to women with mobility impairments. Data on satisfaction with health care among people with hearing impairments come from an analysis of the Disability Followback Survey, Phase II of the National Health Interview Survey on Disability, conducted 1994–97.
Harris poll data on health care satisfaction come from The 2000 N.O.D./Harris Survey of Americans With Disabilities, available from the National Organization on Disability (www.nod.org).
Several General Accounting Office reports, all available online at www.gao.gov, are the sources of data on availability of employer-provided insurance coverage, insurer practices, and insurance premiuMs. Bureau of Labor Statistics data on eligibility of part- and full-time workers for health insurance benefits are cited in GAO/HEHS-88-184, “Employment-Based Health Insurance: Medium and Large Employers Can Purchase Coverage, but Some Workers Are Not Eligible,” July 1998. Data on pre-existing condition exclusions in employer-provided group health plans and on costs of HIPAA-mandated individual health plans come from GAO/HEHS-99-100, “Private Health Insurance: Progress and Challenges in Implementing 1996 Federal Standards,“ May 1999. Data on insurance company practices with regard to denial of health care coverage come from GAO/HEHS-97-8, “Private Health Insurance: Millions Relying on Individual Market Face Cost and Coverage Trade-Offs,” November 1996, and GAO/HEHS-98-201, “Health Insurance for Children: Private Individual Coverage Available, but Choices Can Be Limited and Costs Vary,” August 1998. Data on mental health insurance coverage restrictions in group health plans come from GAO/HEHS-00-95, “Mental Health Parity Act: Despite New Federal Standards, Mental Health Benefits Remain Limited,” May 2000.
A synopsis of the Cornell University survey of human resources managers is available online at www.news.cornell.edu/releases/April99/Wkplce.disabil.html.
Data on the extent and consequences of denied referrals for mental health services come from the 1999 Survey of Physicians and Nurses conducted by the Kaiser Family Foundation and the Harvard School of Public Health; findings are available online at www.kff.org/content/1999/1503/.
HIDDEN DISABILITIES
Although people often associate disability with very visible limitations in physical function—an inability to walk, see, or hear—the vast majority of the population with disabilities have limitations that are far less apparent. Among those said to have "hidden disabilities" are people with cognitive and emotional problems, limitations that, while not visible to the casual observer, can nevertheless cause serious difficulties in school, at work, or in managing the activities of day-to-day life. Because their disabilities are less obvious and less well understood, people with these hidden disabilities face different and sometimes more insidious forms of stigma and discrimination, more pervasive and ill-informed myths and stereotypes about them. When they seek the accommodations that would enable them to succeed on the job or in school, their requests are often denied, their status as people with legitimate disabilities viewed with skepticism by employers and school officials who mistakenly believe that only people with more visible forms of disability deserve legal protection.
This edition of Disability Watch focuses on two widely prevalent types of hidden disability: learning disabilities, which are explored in Chapter 3, and mental health-related disability, which is covered in Chapter 2.
CHAPTER 2
MENTAL HEALTH AND DISAILITY
Stigmatization of people with mental disorders has persisted throughout history. It is manifested by bias, distrust, stereotyping, fear, embarrassment, anger, and/or avoidance. Stigma leads others to avoid living, socializing or working with, renting to, or employing people with mental disorders, especially severe disorders such as schizophrenia.... It reduces patients’ access to resources and opportunities (e.g., housing, jobs) and leads to low self-esteem, isolation, and hopelessness. It deters the public from seeking, and wanting to pay for, care. In its most overt and egregious form, stigma results in out-right discrimination and abuse. More tragically, it deprives people of their dignity and interferes with full participation in society.
– The Surgeon General of the United States
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KEY POINTS: Mental Health & Disability
- At least 4.7 million adults and 1.3 million children experience disability as a result of mental health conditions.
- Major depression is the most prevalent condition, affecting 35% of those with mental health disabilities.
- Among racial groups, reported prevalence of mental health disability is highest among Native Americans and lowest among Asians and Pacific Islanders.
- Physical disability and mental health disability are closely linked. Half of adults with mental health disabilities also have significant physical disabilities, and 40% of adults with severe physical disabilities experience mental health symptoms.
- Both medical and non-medical, consumer-directed approaches to dealing with mental health conditions have proven effective, but many people with mental health disabilities receive no services.
- When people with mental health disabilities do seek and obtain treatment, the services they receive are often substandard and very often incomplete.
- People living in mental health hospitals and other institutions often receive cruel, inhumane treatment; overuse of physical restraints leads to dozens of patient deaths each year.
- Only one-third of working-age adults with mental health disabilities are employed, largely because of employer reluctance to hire and retain workers with mental health conditions.
- Most special education students with mental health disabilities are educated in fully or partially segregated environments.
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A major cause of disability
In his December 1999 report on mental health, the Surgeon General estimated that about one in five Americans experiences a mental health disorder in a given year, regardless of whether or not treatment is sought and the condition is diagnosed. Specifically, as many as 21% of older children and adolescents (ages 9–17) have mental health symptoms at any given time, and a similar 21% of adults aged 18–54 and 20% of older adults experience a diagnosable mental health disorder during the course of a year. A subset of these populations can be considered to have mental health–related disabilities—in other words, mental health conditions significant enough to limit major life activities.
Data from the National Health Interview Survey on Disability (NHIS-D) indicate that about 4.7 million adults, or 2.5% of the population over 17 years of age, have a mental health condition that seriously impacts their ability to work, attend school, or manage their day-to-day activities. These statistics are based on self- or family-reported prevalence of one or more of a list of mental health symptoms, coupled with an indication that the reported symptom or symptoms were severe enough to have limited the person’s activity during the 12 months prior to the interview. Because of the stigma associated with mental illness, it is likely that a significant fraction of such problems would go unreported to survey-takers; the actual prevalence of mental health disability in the adult population is probably significantly larger than 2.5% cited.
Among children, a slightly smaller proportion—2.1%, or 1.3 million children and adolescents from 2 to 17 years of age—have mental health disabilities. This population is identified by parental report of problems or delays in emotional or behavioral development, coupled with an indication either of problems at school or of difficulty getting along with peers. Again, the prevalence of mental health disability among children is probably underreported in the survey.
Adults with mental health disabilities
Frequent depression or anxiety is the symptom most often reported, by three-quarters (75%) of adults with mental health disabilities, or 3.5 million persons. “Serious difficulty coping with day-to-day stress” is a distant second, affecting 2.5 million persons, or just over half (52%) of adults with mental health disabilities. Next are the 2.3 million persons (48% of adults with mental health disabilities) reported to be “frequently confused, disoriented, or forgetful,” followed by 1.9 million (41%) who have “a lot of difficulty concentrating long enough to complete everyday tasks.” One-third (33%) of adults with mental health disabilities have phobias or unreasonable fears, one-fifth (20%) have “a lot of trouble making or keeping friendships,” and one-sixth (16%) have “a lot of trouble getting along with other people in social or recreational settings.”
Specific mental health disorders are also asked about in the survey. Again, depression leads the list, with an episode of major depression during the previous year reported by more than one-third (35%) of those with mental health disabilities. Major depression is a severe, debilitating condition that should not be confused with a case of “the blues,” which is what people often mean when they speak of being depressed. Common symptoms of this disorder include a complete inability to experience pleasure, a pervasive sense of hopelessness, and an inability to lift oneself out of one’s mood even in when positive events occur.
Other disorders affecting the population with mental health disabilities occur much less often: antisocial personality, obsessive-compulsive disorder, or other severe personality disorder (12% of adults with mental health disabilities); manic episodes or bipolar disorder (12%); paranoid or delusional disorder, other than schizophrenia (8%); alcohol abuse disorder (7%); schizophrenia (5%); Alzheimer’s or other forms of senility (5%); and drug abuse disorder (4%).
Age and gender
Among adults of all ages, women are somewhat more likely than men to report mental health disabilities. Overall, 2.8% of women are affected by mental health disability, compared to 2.1% of men. Rates of mental health disability generally increase with age: Among the working ages, only 1.7% of those under 25 have mental health disabilities, but the rate increases steadily to 2.9% of 45- to 54-year-olds. Reported mental health disability drops a bit for those around retirement age (2.6% for those aged 55–64 and 2.0% for those 65–74). But by far the highest rate of mental health disability is reported for those 75 years of age or older: 4.4% overall, or 4.1% of men and 4.6% of women in this age group.
These statistics apply to persons living in the community. Among those living in nursing homes, half of whom are at least 85 years of age, the rate of mental health disability is much higher. According to 1996 data from the Medical Expenditure Panel Survey (MEPS), nearly half (48%) of nursing home residents are reported by staff as having Alzheimer’s or other forms of dementia, and one-fifth (20%) are said to experience depression. Orientation difficulties (problems with knowing one’s location, the season of the year, or the identities of familiar staff members) are experienced by almost two-thirds (73%) of nursing home residents.
Women who live in nursing homes are more likely than men to have both dementia (49% vs. 45%) and depression (21% vs. 17%). But men are slightly more likely than women to be reported as having orientation difficulties (76% vs. 72%).
Race, ethnicity, and poverty status
Reported rates of mental health disability vary considerably among racial and ethnic groups. Some of this variation, however, is probably due to differences in the way mental health is viewed by members of the various cultural groups, as well as differing levels of stigma associated with mental illness.
Reported rates of mental health disability are about equal for whites and blacks, with African Americans experiencing only slightly higher rates than whites (2.9% vs. 2.4% of adults and 2.5% vs. 2.1% of children). Latinos are also affected at about the same rates as people not of Hispanic origin (2.7% vs. 2.5% of adults and 1.8% vs. 2.2% of children; the differences are not statistically significant). Special-ed statistics show a similar pattern: African American students receive educational services related to “emotional disturbance” slightly more often than whites (1.1% vs. 0.8%), and Latino children somewhat less often (0.5%).
Native American adults, on the other hand, have significantly higher rates of reported mental health disability than members of other racial groups: 5.5%, more than twice the rate (2.4%) for whites. Among children, however, Native Americans have about the same rate of mental health disability (2.3%) as do white (2.1%) and black children (2.5%).
In contrast, Asian Americans and Pacific Islanders of all ages have much lower rates of reported mental health disability: The prevalence is only 1.5% among adults and 0.3% among children. Department of Education statistics confirm the low likelihood of mental health disability—only 0.2% of Asian/Pacific Islander children enrolled in school receive special-ed services related to emotional disturbances, compared to a rate four times as high for white children (0.8%).
People who live in poverty are much more likely to have mental health disabilities than those living above the poverty line. The disparity is especially pronounced among adults: 6.7% of poor adults experience mental health disability, compared to 1.9% of those who are not poor, a ratio of 3.5 to 1. Since adults with mental health disabilities often have difficulty with work-related tasks, in addition to the stigma they face in finding and keeping a job, many receive little or no income and fall into poverty as a consequence. Among children, however, the presence of mental health problems cannot be seen as a cause of poverty; still, 3.2% of poor children have mental health disabilities, a rate more than 50% greater than the 1.9% for children who are not poor.
Thus, it seems clear that, contrary to certain stereotypes, mental health disability is the sole province neither of wealthy white adults nor of poor black children. Instead, it appears to affect white, African American, and Latino children and adults about equally, with a disproportionate share of mental health disability occurring among the poor, and in particular among impoverished adults. Survey data cannot be used to prove that poverty is a cause of mental health disability, but poverty—along with the stressful life events frequently confronted by many poor people—has been shown to be a risk factor in developing certain mental health disorders, according to the Surgeon General’s report. In addition, people living in poverty who develop mental health disorders tend to fare worse in the long run than wealthier Americans, increasing the risk that their conditions will become disabling.
The connection between mental and physical disability
The health of the mind is intimately connected to the health of the body. Modern science has shown that what we think of as mental processes —thoughts, emotions, interpretations of the world around us—reflect chemical and electrical processes that take place in the brain. Similar processes in the brain control the muscles of the body and receive and evaluate sensory stimuli. Physical disorders of the brain can therefore affect both mental and physical health, and—via the highly interconnected circuitry of the brain—emotional problems can readily affect physical health, just as physical diseases and impairments can affect mental functioning and therefore mental health.
There are also important social factors that connect physical and mental health. A person with a physical disability who experiences frequent environmental or societal obstacles to participation may develop emotional problems such as depression as a result. At the extreme, involuntary social isolation can be very damaging to one’s mental health. And someone who loses a job or is denied a job opportunity because of a mental health disability is deprived not only of income but of health insurance benefits as well; both physical and mental health suffer as a result.
It comes as no great surprise, then, that there is a substantial overlap between the populations with mental and physical disabilities. Fully half (51%) of adults with mental health disabilities also have significant physical disabilities, whether sensory or mobility-related. More than one-quarter (27%) have severe physical disabilities.
Although both mental and physical disabilities occur with greater prevalence in the elderly population, the overlap between the two is not just due to the presence of very elderly people in the population with mental health disabilities. Among working-age adults with mental health disabilities, 44% have significant sensory or mobility limitations. Even for this age group, then, there is a significant fraction who might be considered doubly disabled—experiencing significant disability due to both physical and mental health conditions or impairments.
Looked at the other way, there is also a very significant overlap: A large fraction of people who have physical disabilities (again, due to mobility or sensory limitations) also have mental health conditions or symptoms, many severe enough to cause disability in themselves. Some 40% of adults with severe physical disabilities have self- or family-reported mental health problems, and 15% have what we classify as mental health disability. Of those with moderate physical disabilities, 26% have mental health symptoms and 7% have mental health disabilities. In contrast, only 7% of the adult population without significant physical disability report mental health symptoms, and only a bit over 1% have mental health disabilities.
Frequent depression and/or anxiety is the mental health symptom most likely to be reported by those with severe physical disabilities (26%), followed by frequent confusion or disorientation (19%). Serious difficulty coping with stress, significant difficulty concentrating, and phobias or unreasonable fears are each reported by at least one-tenth of persons with severe physical disabilities.
Overall, 7.5 million American adults with significant physical disabilities also experience mental health symptoms; nearly 5 million experience frequent depression. Some
2.4 million adults can be considered to have both a mental health disability and a significant physical disability. These statistics tells us quite clearly that more attention must be paid to the mental health of people with physical disabilities, as well as to the physical health of people with mental health disabilities.
Mental health treatments and supports are generally effective
There are effective medical treatments for most mental health problems and disorders. Non-medical approaches, such as peer support groups, have also been shown to be effective; these consumer-directed services are discussed at the end of this section.
Medical treatment of mental health disorders
According to the National Institute of Mental Health, medication, psychotherapy, or both in combination help to alleviate symptoms in four-fifths of people with depression and between 70% and 90% of people with panic disorder. Statistics presented in the Surgeon General’s report on mental health reveal that conventional antipsychotic medications have been shown to be effective in treating symptoms in 70% of persons with schizophrenia, one of the most severe forms of mental illness. These are a few examples of mental health disorders that can be treated effectively using traditional methods.
Unfortunately, nearly two-thirds of people with diagnosable mental health disorders do not seek treatment, according to the Surgeon General. And when they do, significant barriers exist to obtaining care, especially among people who lack health insurance or who have insurance that doesn’t cover mental health services or offers only limited coverage (see the section on access to mental health services in Chapter 1). In addition to lack of access, the stigma associated with a mental health diagnosis remains a major factor in limiting people’s willingness to seek treatment.
Few get treatment—especially among young adults and the very elderly
Data from the National Health Interview Survey on Disability confirm the low treatment rates reported by the Surgeon General. In an initial interview, adult respondents are asked about mental health symptoms, limitations in activity caused by them, and prescription medications being taken for an ongoing mental or emotional problem. People identified as having mental health or other disabilities are reinterviewed about a year later and asked about their use of mental health services—inpatient, outpatient, or from a community support program—during the prior 12 months. From these responses, we can estimate that only three-tenths (29%) of adults with mental health disabilities obtain mental health services in a given year, and only half (49%) are taking medications related to their mental health problems.
To the extent that these figures reflect a lack of access to treatment and services, a lack of awareness as to the effectiveness of treatments, or a reluctance to seek treatment because of stigma, the rates seem disturbingly low. But it is also likely that some people who have not sought treatment have made an informed decision not to do so despite the ready availability of treatment options, perhaps preferring informal supports instead of formal services.
Women are somewhat more likely to be taking medication than men (52% vs. 45%), but the difference in use of mental health services is small and not statistically significant (30% for women vs. 28% for men). Age plays a much more important role than gender, however, in determining the likelihood that a person will receive treatment for a mental health disability. Services use is highest among persons between the ages of 25 and 44, at just under 40% of that population. Above that age group, the likelihood that a person with a mental health disability uses mental health services drops steadily, decreasing to 28% for 55- to 64-year-olds, 18% among those aged 65–74, and only 3% for those 75 years of age or older. Younger adults—below age 25—also have a rather low rate of services use, at only one-quarter (24%) of that population.
Use of prescribed medication is also lowest among the very elderly—27% of those 75 and over—and among the very young—35% of those below 25 years of age. In contrast, 60% of those between the ages of 45 and 54 take medications to control their mental health symptoms.
Treatment gaps: race, ethnicity, poverty, and education
Poorer people are less likely to be taking prescription drugs to alleviate the symptoms of their mental health conditions, as are members of racial and ethnic minorities. But by far the most striking gap in services and medication use is between those who are well educated and those who are poorly educated, strongly suggesting that lack of awareness of treatment options is a key reason for the low level of medication and services use among people with mental health disabilities.
Among adults with mental health disabilities, members of racial and ethnic minorities are significantly less likely than whites to be taking medication to control their symptoMs. Only about four-tenths of African Americans and Native Americans (42% and 39%, respectively) and less than one-third of Asian/Pacific Islanders (32%) take prescription drugs, compared to just over half (51%) of whites. Among Latinos, 39% take mental-health-related medications, compared to 50% of the population not of Hispanic origin.
Although these gaps in the use of prescription drugs would seem to point to differences in access to mental health services, there are no statistically significant gaps in the actual use of such services among the racial and ethnic groups. Perhaps the gaps in medication use derive instead from differences in income and in health insurance coverage (see Chapter 1), which influence the ability of families to obtain and pay for the medications that are prescribed for them. And, since taking medication is a matter of individual choice for the consumer of mental health services, cultural differences may also play an important role in creating these racial and ethnic gaps.
Family income also matters. People with mental health disabilities living below the poverty line have a lower rate of medication use than those living above poverty (45% vs. 51%). But again, the gap in the use of mental health services is small and statistically insignificant: 27% for those who are poor vs. 30% for those who are not.
Educational attainment has a much more dramatic effect on the use of both mental health services and medications. College graduates with mental health disabilities are twice as likely to use mental health services in a given year as are people without a high school diploma—42% vs. 21%. And while nearly six-tenths (59%) of college graduates are taking prescription drugs to alleviate the disabling affects of their mental health conditions, only just over four-tenths (42%) of those without high school diplomas take similar medications.
Treatment is often substandard and ineffective
When people with mental health disabilities do seek and obtain treatment, the services they receive are often substandard and very often incomplete. A recently published study of the treatment received by 719 people with schizophrenia reveals low levels of compliance with recommended standards for medication levels, for treatment of side effects and co-occurring mental health conditions, and for provision of support services. Lack of awareness of current treatment practices is a serious problem among mental health practitioners, and the result is ineffective treatment, often resulting in relapse, frustration, and abandonment of the mental health services system.
Only three-tenths (29%) of patients taking maintenance levels of antipsychotic drugs are given the correct dosages, according to published data from the Schizophrenia Patient Outcomes Research Team (PORT) Client Survey. Four-tenths (39%) receive dosages too low to be judged effective, while the remaining three-tenths (32%) get too much medication, needlessly increasing their risk of serious side effects. Levels of medication given for acute episodes are more likely to fall within the guidelines, but more than one-quarter (27%) of those persons who were members of racial minorities receive dosages in excess of recommended levels.
Among people being treated for schizophrenia, the side effects of antipsychotic medication can include shaking, restlessness, or sluggishness (“feeling like a zombie”). Overmedication is therefore particularly problematic, since it can reduce a person’s ability to function at a level that enables them to work or remain active. And, although treatment standards call for the use of an anti-Parkinson agent to treat such symptoms, only about half of those reporting such symptoms (54% of inpatients and 46% of outpatients) were given these medications.
An alarmingly high proportion of people with schizophrenia commit or attempt suicide, but, despite treatment guidelines, only a minority (one-third of inpatients and less than half of outpatients) of those showing signs of depression receive the recommended antidepressant medications, according to the survey. Only three-tenths (30%) of non-white patients judged to need antidepressants actually receive them.
Less than half (45%) of outpatients with schizophrenia receive group or individual psychotherapy, even though it has been found to be beneficial. Family supports are rarely provided, according to the PORT survey, and community-based treatments are rarely offered.
Institutional care is too often inhumane, abusive
Given the stigma associated with mental health disorders, the reluctance of insurance companies to pay for their treatment, and the lack of awareness among mental health practitioners of appropriate and effective treatments, it is perhaps no great surprise that people with mental health disabilities are often reluctant to seek out mental health services. But there is perhaps an even greater reason to avoid contact with the medical establishment: fear of institutionalization. And fear of the abusive and inhumane conditions often found in mental health facilities, treatment so abysmal that death is far too often the result.
The previous edition of Disability Watch described the shockingly poor treatment received by people with disabilities in many nursing homes, including many instances of overuse of physical and chemical restraints to keep residents docile. These problems are also found in other types of institutions, including mental health hospitals and residences. A 1998 investigation by the Hartford Courant found 142 confirmed incidents throughout the United States in which residents of mental health or mental retardation facilities died after being either physically restrained or locked away in seclusion. Most such incidents go unreported, however, and a statistical analysis suggests that the actual national rate of such patient deaths is between one and three per week.
The Courant found 23 cases in which patients died after being restrained in face-down floor holds. Twenty deaths occurred after the patient had been tied up and left alone for hours in wrist and ankle cuffs or vests. The newspaper found that restraints were too often being used not to prevent patients from assaulting others or hurting themselves, but as a means of discipline or punishment, or for the convenience of the staff.
The National Alliance of the Mentally Ill (NAMI) has a file of over 40 separate incidents of abuse of seclusion and/or restraints, most of them quite recent. Arizona state investigators discovered that the back of a young girl residing in a mental health facility had been fractured by staff members who had restrained her and then ignored her repeated demands for medical attention. A California woman was left for 18 hours with her hands and feet tied to her bed, without access to water. A Florida hospital has a policy of physically restraining any patient admitted involuntarily, which can occur under state law by order of a single police officer and can last up to 24 hours. In Indiana, a 16-year-old boy had his arms and legs tied to his bed for two weeks, following an altercation with staff. And in several states, people with mental health disabilities died after being held face-down on the ground or in “basket holds” by several staff members.
Much-needed legislation has recently been introduced in Congress that would greatly restrict the use of restraints and seclusion in federally funded hospitals. A physician’s order would be required for any non-emergency use of restraints, which could only be applied if the physical safety of the patient or of other residents were in jeopardy. When a patient dies or suffers a serious injury as a result of the use of restraints or seclusion, the facility would be required to report the incident to the appropriate oversight agency, which would be charged to investigate. Although this proposed law may not go far enough in protecting people with mental health disabilities from abusive treatment in institutions, it would likely result in a decrease in the worst forms of abuse, those resulting in death or serious physical or psychic injury.
Alternatives for treating mental health conditions
A growing movement among people with mental health conditions has resulted in a shift away from a purely medical approach to treatment toward a mixture of medical and non-medical supports and services. The consumer movement does not view mental health treatment as a matter restricted to degreed professionals who treat passive patients. Rather it sees people with mental health disorders as consumers of services that can be provided either formally, by medical professionals or counselors, when appropriate; or formally or informally, by groups of consumers, consumer-run organizations, or organizations that include consumers as well as professionals. Individual consumers have been empowered to make informed choices about treatment options, learn strategies for coping with their conditions, provide support for one another, and share their experiences with others.
Peer support is one of the principal modes of helping people cope with their mental health conditions. Participation in self-help groups has been shown in several studies to be beneficial to the participants—lessening feelings of isolation; increasing awareness of treatment possibilities and coping methods; increasing self-esteem, self-confidence, and psychological well-being; and reducing the risk of future hospitalization. Many organizations have been formed by consumers with mental health conditions to assist others with those same conditions, as well as to engage in consumer advocacy.
Mental health disability and employment
People with mental health disabilities confront stigma and discrimination in many facets of life, but it is in the employment arena that the stereotypes about this population are perhaps the strongest. In the erroneous belief that people with mental health problems are likely to engage in disruptive behavior, employers are reluctant to hire workers known to have mental health disorders. And when they discover that an employee has such a condition, they often seek to terminate his or her employment rather than offering the reasonable accommodations required under the ADA.
Few have jobs, many are able to work
As a consequence, only one-third (33%) of working-age adults with mental health disabilities are employed, compared to more than three-quarters (77%) of those without mental health disabilities, according to data from the NHIS-D. The figure is even lower for people reporting severe mental health conditions: Among those with mental health disability reported as having schizophrenia, paranoia, or some other delusional disorder, only 17% have jobs.
A great many more people with mental health problems could work, especially if offered sufficient job accommodations. Half (51%) of working-age adults with mental health disabilities who are not working consider themselves able to work—about 800,000 people who might be working if they could find an appropriate job. About half of these reported being limited in some way in their ability to work, but still able to work.
Accommodations simple, but hard to obtain
These limitations can often be compensated for with simple job accommodations. For example, people who have trouble focusing on tasks in an environment filled with noise and other extraneous stimuli might be allowed to wear headphones on the job or might be given a soundproofed office. Those who experience restlessness or short attention spans that make it hard to concentrate over long periods of time might be allowed more frequent breaks, or might be given shorter-term assignments with tasks broken down into smaller chunks.
A similar strategy might be useful in helping those who have difficulty coping with deadline pressures or with prioritizing assignments. People unable to work a regular eight-hour day, especially when experiencing drowsiness brought on by medications, might be better suited to a more flexible work schedule or a part-time job.
But it is difficult if not impossible for many people with mental health disabilities to find employers willing to offer such basic accommodations. The 16% unemployment rate (the fraction of labor force participants who are unemployed) for people with mental health disabilities is four times that of the rest of the population.
People with mental health disabilities often report losing jobs or missing out on employment opportunities due to their health or disability status: During the five years prior to being interviewed in the Disability Followback Survey, one-third (32%) of adults with mental health disabilities who had recent work histories either had been fired, laid off, or told to resign from a job or they had been refused employment, a promotion, a transfer, or an opportunity for training. Specifically, 22% had lost a job or been told to quit, 14% had been denied a job, 10% had been denied a promotion, 6% had been refused access to training, and 6% had been denied a transfer. These are among the highest rates of lost jobs and job opportunities reported by any disability group.
Mental health disability in the schools
Among children, mental health disabilities are very often manifested by problems at school. According to reports by parents and family members, more than three-quarters (77%) of children with mental health disabilities have difficulty paying attention in class, and almost as many (74%) have difficulty following rules or controlling their behavior. A majority (59%) have problems understanding instructional materials, and half (50%) have difficulty communicating with teachers and other students.
According to Department of Education statistics for the 1997–98 school year, there are about 450,000 students at least 6 years of age receiving special education services because of an "emotional disturbance." The term is not a euphemism for social maladjustment; the population consists of students with mood disorders, anxiety disorders, attention deficit hyperactivity disorder, behavioral disorders, and other mental health conditions.
Students identified as having emotional disturbances constitute 8% of special-ed students, or 0.9% of the overall student population. The proportion of special-ed students with emotional disturbances has not changed over the past decade, despite the common misconception that there has been a huge growth in the number of students receiving services for mental health problems.
Most children with mental health disabilities are educated in fully or partly segregated settings
Unlike those with learning disabilities (see Chapter 3), a majority (54%) of special-ed students with mental health disabilities are educated in segregated rather than integrated settings—35% in a separate classroom within a regular school and 19% in a separate school or other facility, such as a hospital or other institution. An additional 23% receive their schooling in partly integrated settings,
The 23% figure for full integration, which applies to the 1996–97 school year, is a major improvement over the 13% who were educated in regular classes in 1987–88. But it is still far too low. A segregated education generally implies an inferior education, just as it did when African American children were taught in separate schools. And this form of segregation has the same effect on the students’ social development as it did in the days of racial segregation in the schools—limiting the disabled students’ exposure to non-disabled students and reducing the likelihood of their forming friendships with them, as well as limiting the non-disabled students’ exposure to their peers with mental health disabilities, thus perpetuating the prejudice that these students deserve to be kept separate from the rest of society.
Few finish high school
The very high dropout rate for special-ed students with emotional disturbances provides clear evidence that there is a great deal of room for improvement in the education that these students receive. Only 38% of these students graduate from high school with a regular diploma; an additional 6% receive a certificate such as a GED. The remaining 56%—a majority of special-ed students leaving the educational system—do so without completing their schooling.
Education is critical to employability
Having dropped out of school without finishing, these young adults must then enter the workforce at a substantial disadvantage, if they join the labor force at all. The disadvantage arises not only because people who are well educated find better and higher-paying jobs than do those without much education, but also because people with mental health disabilities, in particular, seem to be far more employable when they are well educated. Statistics from the NHIS-D show that people with mental health disabilities who have high school diplomas are more than twice as likely to have jobs as are those without high school diplomas (38% vs. 18%), and that people with college degrees are more than three times as likely to be employed (57%).
It is possible that the types of jobs available to more educated workers are more amenable to the kinds of accommodations that can enable people with mental health disabilities to function well, or perhaps the jobs themselves are easier to cope with. It is also possible that those employers who hire more educated workers are more willing to take the risk of hiring or retaining an employee with a mental health disability, or are themselves more educated and therefore less likely to rely on false stereotypes in making hiring decisions. Or it may simply be that more educated workers are more in demand in the workforce, more valued for their individual skills and experience, and are therefore more likely to be hired or retained, less likely to be passed over in favor of someone without the stigma of mental illness on his or her record.
Whatever the reason, it seems that the job prospects of a person with a mental health disability are dramatically improved when he or she has a high school diploma or, better still, a college degree. And yet only a minority of adolescents with mental health disabilities —or at least those receiving special education services related to an emotional disturbance—complete high school. The rest face a bleak economic future.
Conclusions
Much of the evidence presented in this chapter points to a crying need for better education—of the public at large, of adults and children with mental health disabilities, of mental health service providers, of insurance companies, of employers, of legislators and administrators charged with setting and enforcing policies related to institutional care.
- The stigma associated with mental health disabilities is largely the result of a lack of awareness among the general public—including people with mental health disabilities themselves—that mental illness affects millions of Americans of all ages, races, and ethnic backgrounds; that people with mental disabilities are rarely violent; that they are often able to function well at work and in social settings. The Surgeon General’s report on mental health is a good start; a great deal more public education will be needed before societal attitudes are significantly affected.
- The attitudes of employers, in particular, must be changed in order to increase employment opportunities for people with mental health disabilities. It is clear that this population is not being given a fair shake in the employment arena, despite the ability of many people with mental health conditions to perform effectively on the job.
- Those who fare worst are those without a decent education, but far too many children in special education due to mental health disability are schooled in segregated settings, and far too many fail to graduate from high school. Despite major improvements in the mainstreaming of most children with disabilities, those with mental health disabilities continue to receive second-class treatment.
-A large proportion of those with mental health disabilities make no use of mental health services and supports, and too many take no medications that could control their symptoMs. The problem is especially pronounced among those without much formal education, suggesting that a lack of awareness of treatment options is a major reason. People who have mental health disabilities must be educated about the efficacy of treatment and the benefits of support groups and other forms of self-help, which could alleviate their symptoms and help them to function better in society.
- Treatments must be made more readily available. Insurers must not be permitted to cling to the misguided notion that mental health problems deserve second-class treatment, that health benefits should be more comprehensive for physical than for mental health conditions.
-Mental health providers must become better informed about treatment protocols, so that those who do seek help for mental health problems will have the best chance of receiving complete, effective treatment. Too often, doses of medications are too high to be safe or too low to be effective, dangerous side effects or co-existing conditions are ignored, and follow-up services are not made available.
-Physicians and other physical health providers must also become more aware of the mental health problems that frequently affect people with physical disabilities, in order to make sure that treatment is made available for these mental conditions as well as for physical health problems or impairments.
-The abusive, inhumane, and often deadly treatment received by people with mental health disabilities must stop. Staff and administrators must be better trained in how to handle problems without resorting to physical restraints, chemical restraints, and/or seclusion. And additional laws must be enacted to protect the rights of the residents of these facilities, so that their safety and dignity can be ensured.
-Finally, people with mental health conditions must be seen as consumers of mental health services rather than merely as patients, and they must be able to make decisions about treatment options based on informed choice. They must be assured the right to self-determination, to decide for themselves the best way to cope with their conditions in order to function well as full participants in society.
PROFILES
Ted Goto is a certified public accountant and a graduate of the University of California at Berkeley. He has a master’s degree in international business, and he currently holds a management position at a non-profit organization in the San Francisco Bay Area.
Ted experienced his first bouts of severe depression in 1983. By 1990, he had become a partner in a major international accounting firm, but his episodes of depression now lasted for months at a spell, and he was no longer able to carry out his work responsibilities. He was living in Japan at the time, and he sought treatment there, but his experiences were less than positive. In Japan, he says, “if you have somebody with mental illness in your family, it’s just not talked about. That’s why you don’t get very good treatment.”
He was eventually diagnosed with bipolar disorder, also known as manic depression. On his return to the United States, he began to receive effective medical treatment. By 1997, his condition had stabilized enough for him to return to part-time work. Since then, through support groups he has attended, he has learned about better medications and dosage levels that have enabled him to control his condition and begin working full time. He has a flexible work schedule, which allows him to take breaks when he needs to.
Mark Gottlieb works as a health physicist for the California Department of Health Services.
A former president of the National Depressive and Manic Depressive Association, he is a highly active member of the mental health consumer movement.
Mark was first diagnosed with manic depression when he was a senior in college. He left school, attempted suicide, and was hospitalized. He eventually returned to school and completed a master’s degree, despite his then-untreated condition, which made it difficult for him to sustain a focus on his studies. After he underwent a second hospitalization in 1981, Mark’s doctor convinced him to start taking medication. The treatment proved effective, and he has since been able to function well on the job and in society at large. “When I work in a partnership with my doctors, I benefit greatly,” Mark says. “Taking responsibility is very empowering.” Participation in peer support groups has also helped him, both in learning coping and managing skills, and in improving his mental health through the opportunity to help others.
Mark is open about his condition at his job, and he has experienced no discrimination there. Social discrimination is another matter. People are superficially friendly, Mark reports, but they fear getting close to a person with a mental health condition. Partly as a consequence, his deepest relationships are with others who also have bipolar disorder.
DATA SOURCES: Chapter 2
The Surgeon General’s Report on Mental Health is available online at www.surgeongeneral.gov/library/mentalhealth.
A Disability Statistics Center analysis of the 1994–95 National Health Interview Survey on Disability, conducted by the author for this report, is the source for data on the overall prevalence of mental health disability among adults and children; on prevalences within age, gender, racial, ethnic, and economic groups; on mental health symptoms and conditions; on physical limitations experienced by those with mental health disabilities; on mental health symptoms experienced by those with physical disabilities; on treatment rates among people with mental health disabilities; on treatment gaps; on the employment status of people with and without mental health disabilities; and on school-related problems among children with mental health disabilities. Data on lost job opportunities among people with mental health disabilities come from a Disability Statistics Center analysis of the Disability Followback Survey, Phase II of the National Health Interview Survey on Disability, conducted 1994–97.
Data from the Medical Expenditures Panel Survey on the prevalence of mental health conditions among persons living in nursing homes come from: Krauss, N.A. and Altman, B.M. Characteristics of nursing home residents—1996. MEPS Research Findings No. 5, AHCPR Pub. No. 99-0006, 1998 (available online at www.meps.ahrq.gov/PrintProducts/researchfind.htm).
Statistics on numbers of students receiving special education services because of mental health disability, as well as on educational settings and graduation rates for such students, come from the U.S. Department of Education’s 1999 report
“Twenty-First Annual Report to Congress on the Implementation of the Individuals with
Disabilities Education Act” (available online at www.ed.gov/offices/OSERS/OSEP/OSEP99AnlRpt). Data on recipiency of special education services, by race and ethnicity, come from the 1998 version, “Twentieth Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act” (www.ed.gov/offices/OSERS/OSEP/OSEP98AnlRpt).
Data on the treatment received by patients with schizophrenia come from: Lehman, A.F., et al. Patterns of Usual Care for Schizophrenia: Initial Results From the Schizophrenia Patient Outcomes Research Team (PORT) Client Survey. Schizophrenia Bulletin 24(1):11–20, 1998.
An October 11, 1998 report in the Hartford Courant (available online at courant.ctnow.com/projects/restraint) is the source for the data on deaths occurring in mental health and mental retardation facilities. A synopsis of the National Association of the Mentally Ill’s files on abuse of seclusion and restraints can be found at www.nami.org/update/hartford.html.
CHAPTER 3
LEARNING DISABILITIES
One of the most widely used definitions of learning disabilities is that contained in Federal law. According to the Individuals with Disabilities Education Act (IDEA), a learning disability is “a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, which may manifest itself in imperfect ability to listen, think, speak, read, write, spell, or do mathematical calculations.” Learning disabilities, which stem from neurological differences in brain structure, are not the result of low intelligence, mental retardation, or generalized developmental disabilities. In fact, many people with learning disabilities have above average intelligence, superior cognitive abilities, and highly developed skills in many areas.
Although children and adults with learning disabilities are often able to devise compensation strategies, these methods are generally time-consuming and imperfect, and their disorder continues to affect them throughout their lives. Nonetheless, with appropriate accommodations, the great majority of people with learning disabilities have the potential to read proficiently, excel academically, and succeed professionally.
Because learning disabilities are most apparent in a classroom setting, they are often diagnosed in childhood and perceived as a problem mostly affecting children and adolescents. But a great many adults are also affected, and just as significantly. Some have been told of their condition in their youth, while others are not diagnosed until adulthood. Many never find out that the cause of their lifelong difficulty with reading, writing, or other basic skills is not due to a lack of intelligence or effort, but to a specific neurological disorder.
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Key Points: Learning Disabilities
- At least 4.1 million Americans of all ages have been diagnosed with learning disabilities.
- Some 2.8 million American children between the ages of 6 and 21 participate in special education programs because of a learning disability.
- More than four-fifths of learning-disabled students attend integrated classes for at least a substantial part of their school day.
- When appropriate accommodations are not provided on standardized exams, students with learning disabilities are often tested not on their knowledge of the subject matter, but on their ability to compensate for their disability.
- A late or missed diagnosis of a learning disability can lead to poor self-esteem, academic failure, juvenile delinquency, and other psychological problems.
- The unemployment rate for working-age adults with learning disabilities is 10%, two-and-a-half times the 4% rate for people without learning disabilities.
- In part because they are often employed in low-paying occupations, adults with learning disabilities earn an average of 36% less per hour than their peers without cognitive disabilities.
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Neurological origins of learning disabilities
Dyslexia, which involves difficulty interpreting written language, is by far the most common learning disability. Recent research has demonstrated the neurological origin of this disorder. Using two separate techniques—one measuring blood flow in the brain and the other, electrical activity—researchers have shown that the brains of people with dyslexia perform differently when trying to decode printed words than do the brains of normal readers, with two distinct parts of the brain that are usually in close contact with each other instead performing their tasks in isolation.
The causes of the neurological disorders that result in learning disabilities are not well understood. Heredity is thought to be an important factor, because learning disabilities tend to run in families. Other possibilities are problems during pregnancy or birth and childhood incidents such as traumatic injury, nutritional deprivation, and exposure to poisonous substances, such as lead.
Attention deficit hyperactivity disorder (ADHD), while not technically considered a learning disability, occurs in many people who have learning disabilities, and, by itself, causes similar levels of poor academic performance unrelated to low intelligence. ADHD is a behavioral disorder characterized by inattention, hyperactive behavior, and poor impulse control, and affecting an estimated 3% to 5% of school-age children. As with dyslexia, recent research has found low levels of blood flow in a certain area of the brains of children affected with ADHD; thus, this condition also appears to have a definite neurological origin.
A large and diverse population
Although some educators are now quick to recognize the signs of learning disabilities in their students, most such conditions went undiagnosed as recently as a decade or two ago. And learning disabilities continue to be under-diagnosed in many schools and among many segments of the population. As a result, most adults and many children with learning disabilities are unaware that they have them.
The true prevalence of learning disabilities has been estimated to be as high as 10% to 15% in both children and adults. But, because learning disabilities so often remain undiagnosed or unacknowledged, statistics from national surveys based on self- or parental reports provide estimates that are much lower. Data from the National Health Interview Survey on Disability (NHIS-D), for example, indicate that there are 4.1 million Americans of all ages with acknowl-edged learning disabilities, or 1.6 percent of the population. Among children 9 years of age or older, however, the reported prevalence is about 5%, consistent with Department of Education figures indicating that 5.6% of school-age children receive special education services because of learning disabilities.
Boys and men are much more likely to have been diagnosed with learning disabilities than are girls and women. Nearly three-quarters (73%) of secondary-school-age children with learning disabilities receiving special education services are boys. Among people of all ages, self- and family-reported learning disabilities occur twice as often among males as females (2% vs. 1%). Research suggests, however, that the true prevalence of learning disabilities is about equal for both sexes; it is the likelihood of diagnosis that differs.
Learning disabilities appear to affect whites, African Americans, and Latinos about equally. Within each group, 6% of the children enrolled in U.S. schools receive special education services related to a learning disability. Parents tell survey takers that 4% of white and African American children, and 3% of Latino children, have learning disabilities. Among adults, about 1% of each group have self-reported learning disabilities.
Rates of acknowledged learning disabilities are significantly higher, however, among Native Americans, and significantly lower among Asians and Pacific Islanders. Some 7% of Native American school-age children receive special education services because of learning disabilities, compared to 6% of whites and blacks and only 2% of Asians and Pacific Islanders. Among adults, self-reported rates are also significantly higher for Native Americans (3%, compared to 1% for whites and blacks) and significantly lower for Asians and Pacific Islanders (0.3%).
Learning disabilities disproportionately affect poor children and adults
Poor children and poor adults are significantly more likely to have learning disabilities than are those living above the poverty line. Among children, 6% of those living in poverty are reported by their families as having learning disabilities, compared to 4% of those living above poverty. And among adults, the self-reported prevalence of learning disabilities among poor people is three times that of persons above the poverty line (2.6% vs. 0.9%).
For adults with learning disabilities, finding a job is often difficult, and finding a high-paying job often impossible (see below), especially when educational attainment has been limited due to problems in school. Poverty is often a result; this is at least part of the explanation for the higher rates of learning disability among poor adults. But among children, the relationship between learning disabilities and poverty is less clear-cut. Perhaps conditions associated with poverty are among the causes of learning disabilities.
It has been asserted, without evidence, that poor children are often coached to fake learning disabilities in order to qualify for government benefit programs such as Supplemental Security Income (SSI). But new data from the NHIS-D squarely contradict this myth. Only one-tenth (10%) of all children with learning disabilities, and only one-fifth (20%) of poor children with learning disabilities, receive SSI benefits. Three-quarters (74%) of learning-disabled children have never even applied for SSI.
Learning disability in the schools
Another myth states that children and young adults who say they have learning disabilities are faking disability in order to gain accommodations, such as extra time to take exaMs. In fact, no reputable study has ever supported this claim. Furthermore, the data once again refute this claim. Two-thirds (67%) of school-age children with learning disabilities experience significant problems in school, according to their parents (who might be expected to down- play problems in school to a survey taker, rather than overstate them).
Specifically, just over half (52%) of children with learning disabilities who attend school have significant difficulty understanding instructional materials. And half (50%) have difficulty paying attention in class, which can be particularly problematic for those students who have ADHD.
Some 2.8 million American children between the ages of 6 and 21 participate in special education programs because of a learning disability. By far the largest disability category in the Department of Education statistics, this group constitutes half (51%) of the 5.4 million students receiving special education services. The number of students identified as having learning disabilities has grown 42% in the decade between 1987 and 1998, compared to a 31% increase in the special-ed program overall.
The vast majority of special-ed students with learning disabilities are taught in either fully integrated or partly integrated settings. This is good news, because students with disabilities who attend classes with non-disabled peers generally get a better education. More than four-fifths (82%) of learning-disabled students attend integrated classes for at least a substantial part of their school day (1996–97 data from the Department of Education, up from 77% during the 1986–87 school year). More than two-fifths (43%) are taught in fully integrated classrooms, up from only 16% a decade earlier; others (39%, down from 61%) are in “resource rooms,” special classes that remove a student from the regular classroom for anywhere between 20% and 60% of the school day.
High-stakes testing and learning disabilities
In most states, student performance is periodically measured through statewide assessments, which rely heavily on standardized testing. School districts use the results of these “high-stakes” tests to make decisions important to the students’ future, such as whether they will advance to the next grade level, attend advanced placement courses, or graduate from high school. Some states have proposed using the test results to determine eligibility for state universities, scholarships, or even employment.
Unfortunately, many of these tests, developed unsystematically and graded against arbitrary standards, provide a dubious measure of the students’ abilities, particularly for students with learning disabilities. For these students, it is often their disability that is being measured rather than their mastery of the