The month of March marks the one-year anniversary of the passage into law of Colorado House Bill HB18-1091, also known as the “Dementia diseases and related disabilities” law, which now clearly defines people with multiple forms of progressive cognitive diseases as having a disability. This law did not just happen; it took the work of a lot of people, including the personal initiative and effort in starting the process by Colorado Senior Lobby’s own Kelley Horton.
The department of National Vital Statistics recently released a report moving dementia from the 6th, to the 3rd leading cause of deaths in the United States. The public is already familiar with Alzheimer’s-type dementia which has memory-related symptoms. But there are several other forms of dementia – Vascular, Fronto-Temporal, Lewy Body, and mixed – also affecting a significant number of adults. Dementia causes disabilities such as sleep disorders, confusion, aphasia, disorientation, hallucinations, and physical pain, among many others.
The Colorado Law establishes that: 1) The term, “Missing persons with a dementia disease and related disability” would be added to the “Missing senior citizen and missing person with developmental disabilities” Alert Program; 2) The CU School of Medicine’s ”Alzheimer’s Disease Treatment and Research Center” be renamed the “Dementia Diseases and Related Disabilities Treatment and Research Center;” and 3) “Dementia diseases have related disabilities impacting memory and other cognitive abilities.”
According to dementia activist, and CSL Board member Ms. Kelley Horton, this final point is “the state’s most significant recognition that dementia is not just a condition affecting a person’s memory, but rather a much more complex set of socially- and physically-disabling symptoms. Once we recognize that dementia is not simply about forgetting things, we can help a lot more people live much better lives, not just here in Colorado, but in the US and in the world.”
Prior to this bill being signed into law on March 19, 2018, by then-Governor Hickenlooper, no other U.S. state had taken on the progressive and humane approach to dementia that both Representative Susan Beckman and Representative (now Senator) Joann Ginal, the bill sponsors (along with Senators Jim Smallwood and Nancy Todd, the bill’s cosponsors), had the foresight to do. Globally, however, the World Health Organization and the United Nations have recognized dementia as a fast-growing disability, thanks to the efforts of advocates living with dementia, willing to speak out in a public forum.
One of these advocates, Dr. Mary L. Radnofsky, Ph.D., the first person with dementia to speak at the United Nations in 2016, supports Colorado’s efforts, “in recognizing our right to access assistance and services that help us maintain a quality of life on par with that of other people. Even though my cognitive abilities are declining because of a degenerative disease, I still deserve support services to live well in my community. I’m still human. Once human, forever human.”
Currently, hundreds of advocates, living with or representing all types and stages of dementia, are calling for their communities to recognize each of them as capable individuals. They are using their collective voices to urge others to participate in conversations about how programs and services should be offered to them. Luckily, Colorado legislators, with the advocacy, support, and testimonies of Colorado Senior Lobby members, and Dr. Huntington Potter and Dr. John Woodcock from CU Medical Center, have all helped to lay the foundation.
Article by Colorado Senior Lobby Board Member
More about Kelley Horton
Kelley Horton lives in the Denver area and received her Master’s in Dementia Studies in December 2018 at Regis University, Denver, Colorado. As a dementia advocate, activist and consultant, she founded Dementia Connections Coalition (DCC). The coalition’s goal is to raise the awareness of the different types of dementia and to empower individuals living with dementia to use their voice to stay active in their lives. The Person with Dementia (PwD) can be encouraged to focus on their strengths as they move through their journey with dementia. DCC campaigns, educates and introduces tools that allows all stakeholders to better understand, accept and honor the PwD. Kelley is available for speaking engagements, training, workshops, and consulting. Contact Kelley through her website and by email.
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