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by Patty McGill Smith, Anne M. Lauritzen, and Mark A. Smith
The success of the Americans with Disabilities Act (ADA) is visible in many aspects of the lives of our children. As parents of children with disabilities who are now well into adulthood, we have sought continued acceptance of them and their inclusion into all aspects of community life. A major key to this has been the continual and consistent hard work and advocacy by the parents and families of people with disabilities, as well as people with disabilities themselves.
This, the 25th anniversary of the ADA, provides an opportunity to celebrate the accomplishments of these efforts. Our children, two born before passage of the ADA, and one in the same year, have grown up. One is 39 years old, one is 45, and the third is 25. They are benefiting from legal protections the law has provided, including protections to individuals with disabilities in employment, services and programs provided by State and local governments, public accommodations, telecommunications, and transportation. These protections, paired with the Individuals with Disabilities Education Act (IDEA), are extended to include education. As a result, we see today:
These represent only some of the many examples of individuals with disabilities assuming roles in their communities that would have been unavailable to them were it not for the ADA. However, despite significant progress, challenges remain as well. In the rest of this article we focus in on progress and challenges in four specific, important areas.
In recent years, higher education has played an important part in providing programs addressing the needs of students with disabilities. Early on, demonstration projects were used to develop college curricula for students with disabilities on many campuses across the country. New opportunities for postsecondary education have opened up for students with intellectual disabilities in the past decade fueled by advocacy by students, parents, and professionals. During the consideration of the Higher Education Act Opportunity Act of 2008, advocates were successful in gaining bi-partisan, bi-cameral support to amend the bill to include provisions for students with intellectual disabilities. For the first time, students with intellectual disabilities became eligible for financial aid including grants and work study jobs (to learn more see http://www.thinkcollege.net/topics/opportunity-act). Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSIDs) were authorized to develop model inclusive programs and a National Coordinating Center (NCC) was authorized to evaluate the TPSIDs and provide technical assistance. One of the requirements for the NCC was to form a workgroup to develop model accreditation standards for such programs. In FY2010, appropriations began for the model programs and NCC and continued through FY2014. At this time, advocates are strongly encouraging Congress to provide FY2015 appropriations to fund a new competition. It is also time for Congress to reauthorize the students with intellectual disability provisions in the Higher Education Act of 2008.
Early research is showing that students with intellectual disabilities who participate in postsecondary opportunities are more likely to be employed at competitive, integrated jobs and to live more independently in the community (McEathron & Beuhring, 2011). Currently, there are over 200 college programs for students with intellectual disabilities around the country that students and their families can choose from as they seek these benefits (see http://www.thinkcollege.net, “Find a College”).
While the ADA has provided protections for employees and job seekers with disabilities, it is discouraging that there has not been a significant increase in employment for individuals with disabilities since the ADA was signed by President George H. W. Bush in 1990. According to the National Organization on Disability National Survey, adults with disabilities are still almost three times less likely to be employed in full- or part-time jobs as compared to people without disabilities, with only about one-fifth of adults with disabilities being employed (Kessler Foundation/NOD, 2010). In terms of diversity, the Bureau of Labor Statistics reported in 2013 that the overall unemployment rate among people with disabilities was higher for African-Americans and Hispanics/Latinos with disabilities than for Whites with disabilities (Bureau of Labor Statistics, 2013).
In response to these circumstances, in the spring of 2014, the changes to the rules implementing Section 503 of the Rehabilitation Act announced by the U.S. Labor Department in 2013 took effect (for details, see http://www.dol.gov/ofccp/regs/compliance/section503.htm). Implementation of this reauthorization will likely have significant impact on employment for individuals with disabilities in terms of finally beginning to reverse the unemployment disparities.
Further, in July 2014, the Workforce Innovation and Opportunity Act (WIOA) – which reauthorizes and supersedes the Workforce Investment Act of 1998 and also amends the Adult Education and Family Literacy Act, the Wagner-Peyser Act, and the Rehabilitation Act Amendments of 1998 – was signed by President Obama. Many provisions under this new Act take effect on July 1, 2015. Youth/young adults with disabilities, their families, and the professionals who work with them will need information, training, and resources to help them understand these changes and optimally benefit from them (to learn more see http://www.doleta.gov/wioa/pdf/WIOA-Factsheet.pdf).
Because of the ADAAA (Americans with Disabilities Act Amendments Act of 2008) the definition of “disabilities” was broadened to the maximum extent possible by the terms of the ADA. This amendment is not well known, but it prevents employers from discriminating against employees who have a relationship with someone who has a disability. Otherwise said, parents are protected from discrimination because they have a child or family member with a disability; this is in the language of the amendment that prohibits discrimination against “a qualified individual because of the known disability of an individual with whom the qualified individual is known to have a relationship or association” [42 U.S.C. sec 12112 (b)]. In addition, in 2013 new guidelines were issued by the Department of Labor to broaden the circumstances that allow parents to use the FMLA (Family Medical Leave Act) to care for their adult child with disabilities [42 U.S.C. sec 12102 (2)(A)-(B)]. It makes the age of the child irrelevant in relationship to the onset of the disability (see http://www.dol.gov/whd/fmla/AdultChildFAQs.htm).
Over the years there has been one message that has sustained and strengthened parents in the continuing need to advocate for their sons and daughters: “You are not alone.” The document, You Are Not Alone, was written years ago for parents of young children by Patty McGill Smith, and we now know the principles in it address the needs of parents and caregivers across the age range. Those principles include, but are not limited to, relying on positive sources in one’s life, taking one day at a time, avoiding feelings of intimidation, not being afraid to show one’s emotions, taking care of one’s self, keeping daily routines as normal as possible, remembering that this is your child, and recognizing that parents of children with disabilities (and people with disabilities in general) are not alone in their experiences (to learn more see the document on the opening page of the new Center for Parent Information and Resources Web site at http://www.parentcenterhub.org). Today, there are so many resources on the Internet available for parents and family members. All they have to do is Google a subject matter pertaining to people with disabilities to find a long list of supportive information, and know that they are indeed not alone.
In late 2014, the Stephen Beck, Jr., Achieving a Better Life Experience Act of 2014 (the ABLE Act, S. 313/H.R.647) passed the House and Senate with overwhelming bipartisan support in both houses. President Obama signed the new law on December 19, 2014. Its major focus is on the financial security of people with intellectual disabilities. Under the ABLE Act, people with disabilities would be able to save up to $14,000 annually in special accounts that could be established at any financial institution. Individuals could accrue up to $100,000 in savings without risking eligibility for government benefits like Social Security. And Medicaid coverage could be retained no matter how much money is deposited. Money set aside in the proposed ABLE accounts could be used to pay for education, health care, transportation, housing, and other expenses. What’s more, interest earned on savings within the accounts, which are modeled off of the popular 529 college savings plans, would be tax-free (for details see http://www.autismspeaks.org/advocacy/advocacy-news/able-act-law-2015-what-you-need-know).
We will always be parents of children and adults with disabilities. Our two primary goals for them will always stay the same: (1) acceptance by other people and (2) inclusion into community life. While it would seem that these two goals have been made more attainable by the ADA and other legislation over the years, in reality they cannot be reached without the continued persistence and hard work of families of persons with disabilities and by self-advocates.
Bureau of Labor Statistics. (2013). Economic news release, Table 1. Retrieved from http://www.bls.gov/news.release/disabl.t01.htm.
Kessler Foundation/NOD. (2010). Survey of Americans with disabilities. Retrieved from http://www.2010disabilitysurveys.org.
McEathron, M. & Beuhring, T. (2011). Postsecondary education for students with intellectual and developmental disabilities: A critical review of the state of knowledge and a taxonomy to guide future research. Policy Research Brief, 21(1). [Minneapolis: Research and Training Center on Community Living, University of Minnesota]. Retrieved from https://ici.umn.edu/products/prb/211/default.html.
Patty McGill Smith is the retired Executive Director of the National Parent Network on Disabilities. She lives in Kansas City and may be reached at firstname.lastname@example.org. Anne Lauritzen is retired from many years of advocacy work. She lives in Lincoln, Nebraska, and may be reached at email@example.com. Mark A. Smith is Resource Family Support Coordinator, Nebraska Center on Disabilities, University of Nebraska, Omaha. He may be reached at firstname.lastname@example.org.
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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/281). Citation: Gaylord, V., Wieck, C., Nalker, M., Hewitt, A., & Poetz, C. (Eds). (Winter 2015). Impact: Feature Issue on the ADA and People with Intellectual, Developmental, and Other Disabilities, 28(1). [Minneapolis: University of Minnesota, Institute on Community Integration].
The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/281/281.pdf.
The University of Minnesota is an equal opportunity educator and employer.