| >> youth experts 2004 Future Directions Agenda for Youth with Disabilities Developed by National Youth Leadership Network, |
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| youth expert resources | ||
In order to make real progress, young people with disabilities must involve themselves in shaping the policies and services that affect their daily lives. Over the past two years, NYLN has made every effort to determine the primary focal points for young adults with disabilities in our society. Young adults prioritized education, employment, health care and disability awareness as the areas in which additional emphasis and advocacy were necessary. These are the areas in which the young adult body of the disability movement requests additional attention and action by policymakers. Since 2002, NYLN's goal to contribute to the creation and development of Youth Information Centers (YIC), which we see to be the best way for youth to have direct access to the information and resources that directly affect their lives, has come to fruition. In working toward this goal, NYLN referred to the 2002 goal statement that reads as follows:
The topics represented in this document are those determined to need emphasis at sites such as the Youth Information Centers just described. Community access organizations can also benefit from this first-hand knowledge, experience and suggestions from youth and young adult leaders. Welcome to the 2004 NYLN Future Directions Agenda.
Michael Agyin
Education Aside from the high rate of unemployment and poverty for people with disabilities, the number of youth with disabilities who continue on from a secondary education to a post-secondary education is slim. For people between the ages of 16 and 34, the percentage of individuals who earned a bachelor's degree or more is less than one percent. And youth with disabilities and their families often face increased financial challenges because of costs incurred through healthcare services, support services, or medication. As a result, there is a very large need and desire among youth with disabilities for financial support and scholarships to continue their education. In addition to financial challenges, youth with disabilities have indicated the need for increased support and increased access to services, as well as knowledge about their rights. Youth continue to indicate challenges with accessing services such as Vocational Rehabilitation and Social Security benefits. Additionally, youth would like to be more well-informed of their rights as students and members of the community (e.g. ADA, IDEA). Finally, in order to have opportunities for success and continued education, youth emphasized the importance of accommodations and the need for alternative formats. In order to ensure that all youth with disabilities have the opportunity for educational success, financial aid and transition services are important issues. These services need to begin at the same time as - or earlier than - students without disabilities.
Recommended Solutions: • Scholarship directories should be available with specific emphasis on disability-related scholarships • Text books should include the progression and evolution of disability history • Publications that specify the institutions found to have the best educational practice for accommodating students with disabilities should be available • Graduate studies should be emphasized to include and marketed to students with disabilities • Students should be more well-educated of their rights as they transition from high school education to post-secondary education and/or employment
Troy Justesen Acting Deputy Assistant Secretary for Special Education and Rehabilitative Services, U.S. Department of Education
Employment Nationally, only about 27% of youth with disabilities ever graduate from high school - this compares to 75% of their peers without disabilities - and only 1 in 3 youth with disabilities receive some type of job training. Of the 19,871,681 people with disabilities between the ages of 21 and 64 nationwide, only 37.8% are employed in some capacity compared to 77.5% of people without disabilities of the same age. Those people with disabilities, who are employed, however, are often employed in entry-level, low-wage positions with little opportunity for advancement. We must increase opportunities for youth with disabilities to establish careers that match their interests and provide a beneficial, goal-oriented future. Disincentives and lack of opportunity for employment keep many youth with disabilities from ever entering the working world or becoming general, tax-paying citizens. This should be changed so that youth with disabilities have the same employment and career opportunities as their peers, without risking their eligibility for benefits such as SSI or Medicaid. We must work to remove the stigma that youth with disabilities are to be treated differently in terms of their ability and responsibility to advocate for themselves or to pursue and advance in a career of their choosing. Furthermore, youth with disabilities must be made aware of all career opportunities and not just those in line with low level employment, such as food service, landscaping, cleaning, etc.. With the belief that youth with disabilities are as determined and capable as those without disabilities, youth with disabilities will be free to follow and excel in a life of substantial, gainful employment while becoming fully self-supportive and fully integrated citizens.
Nicole Miles 2004 Conference Participant
Recommended Solutions: • Young adults should be provided with networking sites and contacts when it comes to interviews, internships, and job opportunities • Government programs should contribute more specifically to the career development of youth with disabilities • New initiatives are needed that increase the opportunities for internships, job-shadowing, on-the-job training, and employment in careers chosen by young people with disabilities • Young adults should be made more well-aware of employment initiatives through the U.S. Department of Labor • Young adults should seek opportunity to increase their skill in interviewing techniques and résumé preparation • Assistive technology resources should be more readily available to young adults and more well understood by employers
Jessica Dybdahl 2004 Conference Participant
Healthcare Youth with special health care needs/disabilities want what all youth in America want: independence, health, friends, and jobs. Yet, young adults between 19 and 23 years of age (depending on the state) and youth with special health care needs/disabilities often find little availability of health insurance or health providers. Today, more than 90% of children with disabilities survive into adulthood. This is a tribute to the capability of modern medicine and early intervention strategies. These same young adults are becoming increasingly successful at achieving employment goals of their own choosing; therefore healthcare has become all the more prevalent. Young adults have significant concern about losing healthcare coverage while transitioning from dependent status to that of independence, or from one healthcare provider to another. These same young adults must also seriously consider the healthcare coverage associated with a job when determining if it is a position they can accept. This is noticeably more limiting when compared to how their peers decide which job is right for them. Young adults also worry about the disability awareness of their healthcare provider. Issues such as differentiating one disability from another, common side effects associated with a disability, and simple disability etiquette are continuing concerns of young adults as they strive to take more independent control of and responsibility for their healthcare needs.
Recommended Solutions: • Healthcare professionals should be trained to effectively work with people with disabilities and meet their needs • Doctors should have access to a database compiled of information from medical professionals specializing in disability services, diagnoses, and care • Youth Information Centers should host resources about those specific doctors and medical facilities that specialize in disability services • Clinics should be accessible and affordable to clients with disabilities • Affordable insurance should be available for individuals with disabilities • Healthcare institutes, hospitals, and clinics should seek direct information from young people with disabilities via youth committees or youth positions on already established boards and councils
"A disability may influence the approach to a life activity, but the choice of reaching success - whatever that may be for each particular person - is ultimately up to the young adult."
Christa Bucks-Camacho Youth Transition Specialist, U.S. Social Security Administration
Disability is a natural part of the human experience. In the United States alone, 14.3% of the total American population is directly affected by having some type of disability. And 6.3% - or 4,059,794 people between the ages of 5 and 20 - have a disability. That adds up to 37,458,292 people with disabilities nationwide, making people with disabilities the single largest minority group in the United States. Despite these large numbers of people with disabilities, the concept of having a disability is often considered a taboo subject, and youth with disabilities are taught to hide their disabilities and act "normal" at a young age. We promote youth with disabilities to not hide their disability, but to accept it as part of their personal identity with pride. Today, much of what society knows about disability is based upon the medical model where the primary focus is the disability instead of the individual. It is these out-of-date attitudes and perceptions that present one of the greatest barriers facing people with disabilities, especially youth, today. Greater strides in the area of disability awareness and education are needed now more than ever to dispel common but false myths about disability. This accurate realization is necessary so people with disabilities are no longer viewed as "sick" people who are in need of help, but rather, as individuals who are our friends and neighbors who lead normal and fulfilling lives. Disability awareness is defined by being accurately aware of disability history and culture. Some of the most widely recognized people have disabilities: Whoopi Goldberg, Tom Cruise, and Albert Einstein. Judy Heumann led a disability sit-in movement so that people with disabilities could receive the appropriate facilities in college . These people may have fame associated with their names, but young leaders need to know that they must take on these positions for the future.
Recommended Solutions: • Disability history should be included in general education classrooms • Multi-media approaches should be used to educate the public at large about disability history and culture • Incentives should be available for media to include people with disabilities in realistic ways • Textbook publications and curriculums should include disability history, culture, and inclusion • Legislators and law-makers should be educated and trained on disability history and culture
"NYLN gives [young people] a way to feel like we really do have an important role in what is going on. Making this agenda let us know that people will really listen to us since we are trying to take more responsibility and be more independent about our lives."
Patricia Moody 2004 Conference Participant
For additional information about the National Youth Leadership Network, contact:
Betsy Valnes
"No one fights for us without us. In other words, as far as policy goes, nobody knows more about what we really need or what really works better for us than we do. That's why we're here." Christina Draper NYLN Governing Board
Supported By National Center for Self-Determination and 21 st Century Leadership Academy for Educational Development Federal Sponsors US Department of Education US Department of Health and Human Services US Department of Labor Social Security Administration National Council on Disability References: U.S. Census Bureau. (2003). American Community Survey 2003Data Profile . http://www.census.gov/acs/www/Products/Profiles/Single/2003/ACS/Tabular/010/01000US2.htm . Retrieved September 3, 2004. White, Patience H., MD. (2002). Access to Health Care: Health Insurance Considerations for Young Adults With Special Health Care Needs/Disabilities . http://pediatrics.aappublications.org/cgi/content/full/110/6/S1/1328 . Retrieved August 26, 2004. YES. (2003). Youth with Disabilities and Employment Success . http://www.ids.usm.edu/Yes/default.asp . Retrieved August 25, 2004. U.S. Census Bureau. (2003). American Community Survey 2003 Data Profile . http://www.census.gov/acs/www/Products/Profiles/Single/2003/ACS/Tabular/010/01000US2.htm . Retrieved September 3, 2004 U.S. Census Bureau. (2003). American Community Survey 2003 Data Profile . http://www.census.gov/acs/www/Products/Profiles/Single/2003/ACS/Tabular/010/01000US2.htm . Retrieved October 20, 2004
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"Young people should be involved with leadership because it provides opportunities to serve, educate, and lead without boundaries. Young people can be a source of inspiration and perpetration in helping youth find their voice, in helping youth responsibly stand up for themselves, and in discovering what it means to be a leader with a disability in the 21 st century." 
"An important part of being a national youth leadership member is that we know that our rights and opportunities still need to be advocated for every single day, and the key is your self-advocacy - your advocacy as a community of young people to keep pushing these issues." 
"Activities like NYLN help young people - tomorrow's leaders - strengthen our minds. The more we focus on how to make our ideas work, the more we will actually affect change, the more we will make things easier for generations to come, and the more we will improve our society as a whole." 
"We are a new generation; we offer a unique and fresh perspective on policy (i.e., the idea of disability as a culture and designing systems that help other minorities beside ourselves). We are the future, and we need to take responsibility in shaping our futures and what we will have available to us." 
