Colorado advocacy champion profile: Ashly Johnson

The Alzheimer’s Association is expanding its effective grassroots advocacy effort from the national level to include state-level legislators. In Colorado, the Association is recruiting Alzheimer’s State Champions to interact with each state legislator at key times throughout the year to ensure they are well-versed on the implications of any proposed laws that would affect Alzheimer’s families.

Among the first Colorado Alzheimer’s State Champions is Ashly Johnson of Denver, a staff member with the Denver Regional Council of Governments (DRCOG), a former intern at the Colorado Chapter, and someone who has seen the effects of dementia in her own family.

“My grandfather had dementia, which was not formally diagnosed, but we would go to see him every day in the nursing home and when he was on hospice care,” said Johnson. She wants to take those first-hand experiences and share them with elected officials so that they understand the impact Alzheimer’s and dementia have on Colorado families.

“I think the people who are in the community and experiencing this disease (caregivers or persons with a diagnosis), their stories and struggles and experiences deserve to be heard,” said Johnson.

Reflecting on her internship at the Alzheimer’s Association while earning her master’s degree in social work at University of Denver, she said: “I learned so much from taking Helpline calls and sitting in on support groups, it is clear to me what we should be working for through change. It’s important for people’s stories to be heard. It’s important to educate people and start the discussion.”

Through her work with DRCOG, Johnson helps people who are living temporarily in skilled nursing facilities and want to move back into the community. She helps them explore options regarding housing, home and community-based services.

“There is an overlap between what we do and the Alzheimer’s Association in terms of caregiving, in helping ensure there’s support for caregivers and getting more Medicaid beds, which is a step down from skilled nursing,” she said. “There is a big overlap between older adults and people with disabilities and those living with dementia. A lot of the same legislation serves both communities.”

Johnson has attended several Alzheimer’s Association advocacy days at the Colorado Capitol, met as part of a group with state legislators, and introduced herself to her newly elected state legislator, Julie Gonzales, to let Gonzales know that she will be hearing from Johnson in the future about Alzheimer’s disease-related issues in the future.

The Alzheimer’s Association federal advocacy program has been enormously effective, helping raise awareness of the disease in Congress. Over the past five years, federal funding for Alzheimer’s research has more than quadrupled to a projected $2.3 billion in the coming year.

Colorado’s director of Public Policy and Advocacy, Coral Cosway, notes that the state champion initiative is an effort to create the same level of awareness on a local level so that when legislation is proposed that can affect the quality of life for persons living with dementia or their caregivers, Colorado legislators can make decisions based on a clear understanding of the issues.

“Working as a state champion doesn’t have to take a lot of time,” said Johnson. “For me, the in-person meeting seems a bit intimidating, but contacts also can be done through phone calls and emails. The key is letting your legislator know what’s important to you as a constituent.”

For Johnson, the true value of being an advocate is sharing her personal experience with the disease.

“Not everyone has an understanding of Alzheimer’s or dementia,” she said. “If you’re going through it, you are the expert.”

To learn more about volunteering as a State Champion for the Colorado Chapter of the Alzheimer’s Association, contact Cosway at ccosway@alz.org or 720-699-9276. To fill out an advocacy volunteer application, go to https://alzimpact.org/volunteer

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