The Alzheimer’s Association Hudson Valley chapter invites those whose lives have been touched by Alzheimer’s to participate in Rally Day 2016.
A bus will pick up registered participants in Westchester, Rockland, Orange and Ulster counties that morning and transport them to and from the state Capitol in Albany.
In the Well of the Legislative Office Building, there will be a rally with speakers and presentations before attendees embark on a series of advocacy appointments with lawmakers, where they will share their stories and advocate for related legislation.
Legislation on the Association’s agenda this year includes bills designed to protect vulnerable adults from financial exploitation — one would authorize banks to refuse payments when exploitation is suspected and the other would enable the Office for the Aging to educate the public about the danger of financial exploitation. Others would expand the actions home health aides are certified to perform and establish an online statewide advance directive registry.
Catherine Wilson has advocated for greater Alzheimer’s resources on Rally Day before and plans to again this year.
“I got involved because Alzheimer’s was rampant in my family,” Wilson said. “And the people who are the most aware of it are the people with the least amount of time to advocate on behalf of (their) loved ones.”
She said Rally Day is important because it’s an opportunity to make sure lawmakers understand how devastating the disease is.
“Like so many laypeople, our representatives have a miscomprehension of what Alzheimer’s truly is. They think it is just memory loss, but it’s so much more than that,” Wilson said. “With Alzheimer’s, you can’t turn your back. Life comes to a halt. As a result, families go bankrupt. It affects you for decades to come.”
Wilson was an accountant making around $120,000 when her mother was diagnosed with Alzheimer’s disease. Afterwards, the lack of respite care made it impossible for Wilson to remain in the corporate world. Eventually, she was forced to become a bookkeeper and work multiple jobs, causing her income to drop to barely more than $30,000.
In addition, the disease forced her to become very isolated. She said one of her friends actually thought she had died.
“I was very active, and I disappeared. You can’t get out the door. When you are caring for someone who is housebound, you become housebound yourself. You’re talking about people in the prime of their lives who are disappearing from our communities … because they’re caring for someone with Alzheimer’s.”
In a letter she wrote to Assemblyman James Skoufis last year, she noted that the lack of respite care had not only resulted in her loss of income, career and retirement savings, but also had cost the state in tax revenue from the higher income she was no longer able to earn. Her reduced income also had an impact on the economy by reducing the goods and services she was able to purchase.
“There’s a domino effect across the board. Multiply me by 500,000 other victims in the state and all the lives they touch. How many jobs are lost because we’re not spending money,” she said.
Wilson said she supports the legislation to give bankers the right to take action when exploitation is suspected.
“The legal standard for an investigation is far different than an accounting standard. The legal standard is actually aiding and abetting the criminal,” Wilson said. “An auditor, if they don’t like what they see, is going to audit you. You don’t need proof to do an audit. We need that mindset. The elderly don’t make great witnesses. They can’t tell you what’s going on. You don’t have proof — you only have suspicion.”
“If you know someone who grew up during the Depression,” who was always careful with their money, Wilson said, “and suddenly there are checks against their account being cleared for $20,000, you know something’s going on — but you can’t do anything about that. We really need to get that law passed,” she said.
Registration for Rally Day is $10 and covers the bus fare and lunch.
To register, or for more information, contact Debbie Warburton at dwarburton@alz.org or 800.272.3900 or visit www.alz.org/hudsonvalley and click on the Rally Day registration link in the center of the home page.
Full Article & Source:
Hundreds to Lobby for State Alzheimer’s Legislation
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