To
meditate you are supposed to empty your mind and concentrate on breathing. My
internal conversation goes something like this: Breathe in…what should I fix for supper? I need to pick up a loaf of
bread…breathe out…did I lock my car? I really need to print those forms. I’ve
never had any luck emptying my mind. It just doesn’t work for me because my
brain never shuts down its internal conversation.
Our
internal voices are where we find the motivation to become a voice, or an advocate.
The motivation to be an advocate for a cause you believe in comes from the
inside out. Seeing the devastation dementia had on Jim was motivation enough
for me.
My
first introduction to advocacy was at the Alzheimer’s forum in 2001. Those
first few years, we had to educate our legislators about the devastation of
Alzheimer’s and related dementia. Eventually, everyone knew about Alzheimer’s,
either from us or from personal experience. Over the years, we advocates have
become better trained and well organized under the guidance of the Alzheimer’s
Impact Movement (AIM).
This
year I’ll be making my twentieth trip to DC to visit with my senators and my
representative, Congresswoman Vicky Hartzler. In preparation for the DC trip, Jessica
Snell, Jerry Dowell, and I met with her field representative Rachel Gilroy and District
Director Austin Kramer.
We
discussed AIM’s federal priorities:
1)
An Additional $354 Million for Alzheimer’s Research. We are still playing catch up with Alzheimer’s research
funding at NIH after being woefully underfunded for more than a decade. Our
only hope of staving off a devastating blow to Medicare and Medicaid is to find
effective treatment or a cure. On a personal level, I don’t want anyone to go
through the heartbreak of dementia.
2)
An Additional $20 Million for the BOLD Infrastructure
Act. The BOLD Act uses the traditional
tools and techniques of public health to fight Alzheimer’s on a local level.
Alzheimer’s Centers of Excellence will be established across the country. Local
health departments can implement interventions to help with early diagnosis,
promoting healthy lifestyles to reduce risk, and data collection. The Act also
strengthens the role of the CDC as they lead public health efforts and provide
funding on the state level.
3)
Younger-Onset Alzheimer’s Disease Act (S.901/H.R.1903). Persons with younger-onset dementia do not have access to
the same support and services as Americans aged 60 and older. Jim was only 49,
so we were turned down when we asked for help through the Division of Aging. The
Older Americans Act (OAA) reauthorization includes giving access to these
services to persons with dementia regardless of age, extends the RAISE Family
Caregivers Act from three to four years, and includes elements of the
Supporting America’s Families and Caregivers Act. These successes are largely
because of the thousands of dedicated Alzheimer’s Advocates who don purple
sashes and visit Capitol Hill annually. As Congresswoman Hartzler’s ambassador, I
was pleased that she was one of the co-sponsors.
4)
Improving HOPE for Alzheimer’s Act (S.880/H.R.1873). In 2017, the Centers for Medicare and Medicaid Services
allowed clinicians to be reimbursed for providing care planning for cognitively
impaired individuals. As most of us who have had a loved one with dementia
know, care planning is a vital part of improving quality of life. However, few
people knew about care planning for dementia and the service was not widely
used. The Improving HOPE Act would require Health and Human Services to educate
clinicians on the service and report the barriers keeping individuals from using
care planning. Our role as advocates will be to seek co-sponsors.
Do you
want to be a voice for Alzheimer’s? You don’t have to go to Capitol Hill to
have your voice heard. One of the ways you can lend support is to join the
Alzheimer’s Impact Movement at Alzimpact.org ($20). You will receive updates
and the online tools will make advocacy easy.
During
the AIM Forum, we use an app to keep you updated on the message we are taking
to our legislators. You can pick up your phone, text, use Facebook or Twitter
to add your voice to ours. If enough people whisper the same message, it is
much more effective than when one person shouts.
Copyright
© February 2020 by L.S. Fisher
#ENDALZ
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