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IMPACT

Advocating for Everyone's Family

by Matt Nalker

As a father of six beautiful children – all of which need some level of support, some more than others – I know that getting involved in their lives and empowering them to be independent-thinking individuals is the best thing I can do for them. Ensuring that there are laws and systems in place to support and empower them, and everyone else’s children with disabilities, throughout their lives is a shared responsibility of us all.

Throughout history, it is people who have changed the world, for better or worse. It has never been enough to get a law created and passed; we must then ensure that it is enforced effectively, as well. In fact, while getting support for legislation can be very difficult and take many years, often the real work begins after passage of the bill. For example, the Americans with Disabilities Act was passed in 1990, however, related regulations and standards have been developed over succeeding years. This essentially has meant that although we had a law in 1990 stating people with disabilities should receive equal access, we’ve had to develop, review, and refine regulations and standards to hold businesses and government accountable and ensure that the word of the law, as well as the spirit of the law, are being upheld appropriately. It is up to us as advocates to ensure that implementation and enforcement take place. Otherwise, the law and the efforts expended to get the law in place are meaningless.

The important of advocacy can be summed up with two quotes that we have used for many years. The first is “Injustice anywhere, is a threat to justice everywhere” (Dr. Martin Luther King, Jr.). And one we use most often now, the assertion of self-advocates and their families that there should be “Nothing About Us Without Us.” The meaning of the latter is clear – do not make plans and do not create policies and programs without our input. No one knows our needs and desires better than we ourselves.

Advocacy efforts to ensure enforcement of the ADA have led to the inclusion of people with disabilities in all aspects of implementing and enforcing the law from the federal to the local levels. When the state and national offices of The Arc, national and local Independent Living programs, and others successfully advocate with federal programs – such as the Centers for Medicare and Medicaid Services or the U.S. Department of Health and Human Services – for inclusion of people with disabilities in development of policy and procedure, there is a trickle-down effect to the local level. A good example from Mississippi is the involvement of individuals with various disabilities in the development of the Money Follows the Person plan, which became known as the Bridge to Independence demonstration project. This project is designed to ensure that individuals with disabilities have an option to live in the most integrated setting. This requirement, that states provide services in the most integrated setting, is mandated in the Americans with Disabilities Act and the subsequent Olmstead decision. Individuals with intellectual and other related developmental disabilities have benefitted tremendously from this requirement. While there is not an exhaustive list of services, it certainly includes housing, employment, personal care assistance, transportation, and more. Without the advocacy efforts of The Arc of Mississippi, Living Independence for Everyone (LIFE) of Mississippi, the state’s non-profit Center for Independent Living, Disability Rights of Mississippi, the Parent Training and Information Center and others, the disability community would not have been represented in the Money Follows the Person project. Not only would the program have not successfully served individuals well, people with intellectual and developmental disabilities would have been, at a minimum, disenfranchised and, at a maximum, discriminated against and left in institutional settings without other choices for services had advocacy not occurred.

Another example of the importance of advocacy to enforcement of the ADA comes from the experience of Mississippi with Hurricane Katrina. In the days following the hurricane, as advocacy agencies searched for people with disabilities to determine their safety and well-being, we saw “accessible” FEMA trailers being delivered by the hundreds. The trouble was, the only accessible thing about the trailers was the ramps that were set up at the front doors. Wheelchair users were able to roll up the ramp, but the doorways themselves were not accessible. Many wheelchair users had to camp in tents next to their FEMA trailers. As a result of the advocacy efforts of the disability community in response to this appalling situation, FEMA trailers of the future are promised to be based upon universal design, benefiting all.

Equal access, as required under the Americans with Disabilities Act, has benefitted every person with a disability of any age and any type of disability. There is a freedom of movement in the community that people with disabilities had not previously enjoyed, and it encourages involvement of individuals with disabilities in all aspects of society – work, church, volunteerism, neighborhood development, and much more. Everyone benefits from that!

As advocates, we encourage all people with disabilities and their families to get involved in their futures and to represent themselves at the “seats of power” in our country. Some of the ways that advocacy organizations can do this is to encourage individuals with disabilities and their families to do the following five things:

We all had to start somewhere. Most of us started advocating for ourselves and our children or other family members. Please know that another responsibility lies far beyond our own immediate circle, and that true empowerment and support are about helping those in need – whether they share our genes or not.


Matt Nalker is Executive Director of the Arc of Mississippi, Jackson. He may be reached at matt@arcms.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].
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The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/281/281.pdf.

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