Children's Voice Article, July/Aug 2002
Children with Disabilities
By Kelly Mac
Each of us is affected by disability, whether we have a disability ourselves, or a family member or friend with a disability. As we age, the odds increase that disability will enter our lives in some way, either affecting us directly or someone we know. From learning disabilities, to mental illness, to mobility impairments, people with disabilities live their lives alongside their nondisabled peers.
Children with disabilities are part of the mix. In families, classrooms, and playgrounds, children with disabilities are growing and chasing the education and life opportunities that child welfare workers pursue for all children. The battle to improve the lives of children with disabilities frequently has been uphill--from being denied basic education, to exclusion from public participation, to limited career opportunities. Recognizing and realizing the needs of these children has been a struggle.
Counting the Ways
The U.S. Census Bureau's Survey of Income and Program Participation (SIPP), reported in the February 2001 Americans with Disabilities: Household Economic Studies, estimated that 19.7% of the general population, or 52.6 million people, live with some type of disability. The same study also found that 12.7% of children ages 6-14 have a disability.
The number of people with disabilities in the United States is growing, and the number of children and youth with disabilities are increasing the most. According to the 1998 report, Disability Watch--the Status of People with Disabilities in the United States, from the Disability Statistics Center, the number of children with disabilities increased by 1.5 million, and the number of young adults by 1.9 million, from 1990 to 1994.
As these children age into adulthood, the number of adults with disabilities increases. If current statistics about disabled adults are accurate indicators, record numbers will be unemployed, uneducated, homeless, and living in poverty. SIPP data reveal disturbing trends in poverty--30% of people with a severe disability between the ages of 25 and 64 live in poverty, compared with 8.3% of people without a disability.
The landscape for people with disabilities is daunting, with high rates of poverty, unemployment, and exclusion from society. Children with disabilities face many challenges if they are to become happy, successful adults. Are they receiving the assistance they need, or are children with disabilities being left behind?
Who Are People with Disabilities?
People with disabilities are a diverse population that varies in race, age, religion, ethnicity, and ability and is affected by a range of conditions and disabilities--ambulatory, hearing, seeing, learning, emotional, psychological, developmental, and more. Their disabilities may be acquired in accidents, abuse, or war; from neglect, aging, or disease; at birth; and in other ways.
The 1990 Americans with Disabilities Act (ADA) heralded a shift in understanding people with disabilities by defining disability through examining the limits of the environment rather than merely by medical diagnosis. ADA reframed disability as a cultural problem, not just as a disease of an individual's body. Recognizing that social structures--such as inaccessible buildings, transportation, and discriminatory attitudes--contribute greatly to the exclusion of people with disabilities, ADA has accelerated change and decreased discrimination against and isolation of disabled people.
If a school building has a ramp, for example, then a child using a wheelchair can attend school and is less hindered by the environmental and social constructs that restrict people with disabilities. Many other aspects of society could be altered, usually at minimal expense, reducing the experience of disability to that of difference and not of impossibility. In breaking down social and environmental constructs, disability becomes a challenge instead of an insurmountable barrier.
The most common approach to dealing with disability has been to treat it as something needing to be eradicated. Society has encouraged the belief that people can be treated and cured of disabilities so they will no longer be ill, need accommodations, or experience the stigma of physical or psychological difference. But people with disabilities are not seeking a cure--they are seeking opportunities to live in an accessible society that includes their difference and maximizes their abilities.
Children with disabilities are especially affected by society's stigmas. The Individuals with Disabilities Education Act (IDEA), and its predecessor, the 1975 Education For All Handicapped Children Act (P.L. 94-142), were created to address discrimination and inadequacies in public education. More than 25 years after passage of P.L. 94-142, however, every state and the District of Columbia is failing to enforce key aspects of IDEA while the federal government does little about it.* Many children with disabilities still do not receive the education that nondisabled students receive.
Changes in laws and legal concepts have been influential in changing society to better include people with disabilities. During the last 30 years, early ideas propagated by Social Security have slowly shifted from the medical concept of disability to recognize the struggle for civil rights for people with disabilities.
Section 504 of the 1973 Rehabilitation Act was the first civil rights legislation created for people with disabilities, prohibiting discrimination against anyone with a disability by an entity receiving federal funding. IDEA and its predecessor were the first step toward addressing the civil rights of children with disabilities. ADA in 1990 redefined disability and elevated the civil rights of disabled people by prohibiting discrimination against people with disabilities in the workplace, state and federal programs and facilities, and public programs and facilities. It also required that accommodations be made to make society inclusive of people with disabilities.
Last amended in 1997, IDEA addresses the education of children with disabilities. The major thrust is that all children and youth with disabilities are entitled to a "free and appropriate public education." The law also determines services that schools must provide to children with disabilities, including infants and toddlers. IDEA mandates minimum requirements that states must meet, but states have also enacted their own special education laws that may go further. According to the National Council on Disability (NCD),
But, although IDEA was a landmark legislative event, requiring public education systems to integrate children with disabilities into schools and provide quality education to all disabled children, the law's implementation has not lived up to its promise.
- In 1970, before enactment of the federal protections in IDEA, schools in America educated only one in five students with disabilities. More than 1 million students were excluded from public schools, and another 3.5 million did not receive appropriate services
The likelihood of exclusion was greater for children with disabilities living in low-income, ethnic and racial minority, or rural communities
Today almost 6 million children and young people with disabilities ages 3 through 21 qualify for educational interventions...*
In its 2000 report, Back to School on Civil Rights, a detailed critique of IDEA implementation by each state and the federal government, NCD reveals research by the U.S. Department of Education that all 50 states and the District of Columbia are failing to comply with major portions of IDEA. NCD concludes that states are failing to implement IDEA and that this failure is not slight, but a deep neglect of children with disabilities in the public schools.
NCD Senior Research Specialist Martin Gould comments, "It's a mixed bag. Most states aren't in compliance with some of the basic requirements of IDEA. Some do it better than others."
"The Individuals with Disabilities Education Act is woefully and inadequately enforced," says Andy Imparato, President and CEO of the American Association of People with Disabilities (AAPD). Imparato believes the major problem with enforcement is that nobody takes the responsibilities seriously. If the federal government became serious about enforcement, he says, then the states would have an incentive to do their part.
He also notes another challenge: "Lots of people see IDEA as a funding stream and not a civil rights law. It needs to be taken seriously. Discrimination against children with disabilities is just as horrific as discriminating against [other groups]."
NCD found that the U.S. Department of Justice does not have a system for pursuing action against noncompliant states and local agencies. And, although the Department of Education repeatedly advises states to make changes, it is not enforcing consequences when, year after year, states do not rectify the problems.
Parents are forced, therefore, to enforce IDEA through litigation--at great personal expense of time, energy, and money--and, according to NCD, children with disabilities are the ones who suffer. They are denied their rights to the "free and appropriate public education" guaranteed them by federal law, leaving them behind and unprepared in their education, excluded from their society of peers, and less able to find employment and reach independence when they reach adulthood.
Since IDEA, fewer children with disabilities are excluded from their education, but many are still robbed of their rights in the schools. Although NCD made recommendations in its report, problems persist while Congress and federal agencies continue to debate IDEA. Sections of IDEA are up for reauthorization next year, however, and Congress will be conducting hearings and discussing possible changes in the law.
Empowerment and Hope
Children with disabilities encounter many challenges--among them, inaccessibility, educational obstacles, and fear and mistreatment from society--that affect their self-esteem and futures. As with other children who encounter an inordinate number of challenges in life, it becomes easy to think the worst and expect the least--both on the part of society toward disabled children, and on the part of the children themselves as they look at their lives and consider their prospects. Low expectations drive them farther away from a better future, where acceptance and participation are attainable goals.
Imparato sees a clear link between the challenges children with disabilities encounter and low expectations: "Society tends to have low expectations for what young people with disabilities are capable of. People are concerned that a kid have realistic expectations, but that word, realistic, really bothers me, because it's so hard to say what an individual is capable of. A lot of it has to do with believing in themselves, finding other people who believe in them, and being given opportunity.
Leadership and Mentoring
AAPD is a leader in empowering children with disabilities through mentoring and leadership recognition. Every year, AAPD recognizes a handful of leaders in the disability rights movement with its Paul G. Hearne Leadership Awards. AAPD also coordinates National Disability Mentoring Day in October; community volunteers take disabled children to work, allowing them to see what working is like, get a feel for the social interaction, and begin planning for their careers.
"The best way to empower people economically is through employment, especially through careers," Imparato says, adding that National Disability Mentoring Day "is not about getting a job, but about really figuring out a career path that works for a young person with a disability."
AAPD has also started a congressional internship program for disabled college students in the Washington, DC, area. The eight-week summer internship places student interns in Capitol Hill offices to work on disability policy, technology, and other relevant issues concerning people with disabilities. This opportunity provides a voice for youth with disabilities, helps educate current and future leaders about advocating for people with disabilities, and gives invaluable professional experiences to disabled youth.
Winners on Wheels (WOW) empowers children with disabilities by encouraging personal achievement through a program modeled on Scouting organizations, with opportunities for creative learning and expanded life experiences that help develop independent living skills in children who use wheelchairs.
"There are about one million children under the age of 18 in America who use wheelchairs for mobility," says interim Executive Director Kristine Mettler, explaining the urgency of WOW's programming. "They are more than twice as likely to drop out of high school, and half as likely to complete college [as are] young people without disabilities. WOW
places great importance on giving children with disabilities the chance to develop their skills and their minds so they can be prepared for college or the workforce."
From its headquarters in Fresno, California, WOW distributes lesson plans, badges, and other materials to 30 volunteer-led "Circles," or chapters, in 19 states, serving more than 1,400 children using wheelchairs. Many circle leaders are adults using wheelchairs, allowing the children to interact with role models in wheelchairs.
WOW meetings are designed to be fun and to build confidence and independence. The kids earn badges in activities that range from practical skills to fun activities, including skills such as letter writing, goal setting, personal safety, and banking and money management; sports like wheelchair basketball, bowling, and hockey; and personal development activities like community service, music, and nature. Children who can't find a WOW chapter in their area may be involved through WOW's Wheels Online club (at www.wowusa.com) and the WOW newsletter.
Mettler explains that WOW "teaches kids lifeskills in a fun way and gives them the opportunity to meet diverse children and experience success. Their disabilities become a natural part of their lives, and they learn to creatively participate in and contribute to society."
WOW members and their parents have sent WOW stories about their successes. One boy overcame his fear of spending a night without his parents through WOW sleepovers. Another parent says, "My son is now able to associate with other people in wheelchairs more. He has started talking about things he can do while in a chair when he grows up."
We have made great strides in this country in improving the lives of children with disabilities, but much remains to be done. AAPD's Imparato presses the point: "Just about every political candidate, regardless of their ideological orientation, is going to say they want to come to Washington because they want to fight for kids. But what does that mean? When the President talks about no child left behind, does he really understand what that means for kids with disabilities?"
- National Council on Disability. (2000). Back to School on Civil Rights. Available online at www.ncd.gov/newsroom/publications/backtoschool_1.html. Washington, DC: Author.
Where to Start
Funded by the Office of Special Education Programs, U.S. Department of Education, the National Information Center for Children and Youth with Disabilities (NICHCY) is a project of the Academy for Educational Development. Since 1978, NICHCY has been the national information clearinghouse on disabilities and disability-related issues for children and youth, birth to age 22, answering questions from families, educators, and other professionals on such topics as health conditions, specific disabilities, special education, and parenting resources.
NICHCY makes information and referrals available on the Web, including contact information for organizations specializing in disabilities, state and national resource sheets, and a list of publications. NICHCY also offers materials and phone consultation in Spanish.
NICHCY, PO Box 1492, Washington DC 20013-1492
Association of American People with Disabilities
1819 H Street NW, Suite 330, Washington DC 20006
Association of American People with Disabilities (AAPD) is the largest nonprofit nonpartisan cross-disability organization in the United States. Its members include people with disabilities and their family members, friends, and supporters.
Disability Statistics Center
3333 California Street, Suite 340, Campus Mail Box 0646, San Francisco CA 94118
Disability Statistics Center (DSC) is a national center of research and training in disability statistics funded by the National Institute on Disability and Rehabilitation Research.
World Institute on Disability, 510 16th Street, Suite 100, Oakland CA 94612
A bimonthly Web magazine of international disability news and views, DisabilityWorld is published as part of the World Institute on Disability's International Disability Exchanges & Studies (IDEAS) project, which is funded by the National Institute on Disability and Rehabilitation Research.
National Council on Disability
1331 F Street NW, Suite 85, Washington DC 20004
NCD is an independent government agency that gathers and reports data and recommends government action on such issues as employment, assistive technology, education, and others affecting people with disabilities.
Winners on Wheels
WOW is an educational and personal development program, modeled on Scouting, for children who use wheelchairs.
Kelly Mack is an associate editor with CWLA. In the September/October issue of Children's Voice, the next article in this two-part series will explore the status of children with disabilities in abuse, neglect, foster care, adoption, housing, health care, and other areas of child welfare, and how can child welfare workers and advocates best meet the needs of these children.
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