Keep Alzheimer’s ‘compassionate care’

Words from an advocate to those who fund healthcare programs in Florida:

There are more than a half-million Alzheimer’s patients in Florida, and that number will grow over the next decade.

We understand these are incredibly tough economic times in Florida’s Capitol, and lawmakers are making difficult choices. We have already lost the Medicaid Alzheimer’s Program (MAP) Waiver.

We cannot afford to lose the base funding that allows Alzheimer’s Community Care to provide necessary services to Alzheimer’s patients and their caregivers.

For one patient in a semi-private room at a nursing home, the cost to taxpayers averages about $65,000 per year. Finding ways to keep patients with family as long as possible is critical; today’s staggering costs pale in comparison to the expense we could face in the years to come. The specialized services offered to Alzheimer’s patients and caregivers save Florida hundreds of thousands of dollars every year.

Please don’t turn your back on Florida’s most vulnerable patients-they are the true heroes of our cause. They should not be left without services-not ever.

Do not cut or eliminate the funding for Alzheimer’s Community Care through the Alzheimer’s project funding. Help us preserve the dignity of patients and caregivers after a diagnosis of Alzheimer’s disease. Help us maintain their well-being, their safety, and their access to care by funding these critical services. Help us assist caregivers in caring for their loved ones at home for as long as possible, and delay or avoid nursing home placement-the final and most expensive option.

2010: A Challenging Year

 On April 30, 2010 nine years of hard work ended with disappointment when the first, and only, Alzheimer’s Medicaid Waiver was ended by the Florida Legislature. 

It was successful and had great promise for saving Florida dollars for the care of Alzheimer’s.  But because of the economy, lack of time, and being such a young Medicaid Waiver, it just did not have the stamina of conviction to be adopted by the Legislature for its continuation. 

We believe in the services the Waiver provided that were specifically for meeting the needs of both patients and caregivers.  We hope to have all of your support as we fight to have those services restored. 

In May 2010, the Florida Silver Alert Support committee of which I am chair, produced a Florida Silver Alert Program.  It is saving lives and successfully finding cognitively impaired drivers, bringing them home safely.  Our organization during the month of June and July 2010 devoted much of its resources in supporting the work of the Florida Silver Alert Support Committee.  The program is now operating very successfully thanks in great part the commitment from Law Enforcement, FDLE, DOEA, and the many agencies who are silent heroes, performing many acts of kindness to those who our most fragile and vulnerable citizens: our Alzheimer’s patients and their families.

The Financial Power of Seniors and Alzheimer’s Families in Florida

I recently made presentations at all three of the Legislative Delegation Hearings in Palm Beach, Martin and St. Lucie Counties.  The goal of my presentations was to share with our elected legislative members (House of Representatives and Senators)  just how many of our seniors and Alzheimer’s families contribute to the financial prosperity of Florida. 

Some of the highlights of my presentation are:

  • $3.9 billion is mailed monthly to those who receive Social Security.  When you include federal or civil pensions, the amount jumps to $5 billion monthly. 
  • Florida seniors contribute $1 billion annually to Florida’s charities.
  • Former Governor Jeb Bush realized how important this population was to Florida’s prosperity.  He actively recruited throughout the nation that more retirees consider moving to our state.
  • Aging increase the risk of getting Alzheimer’s disease or related disorders.
  • Alzheimer’s families will cope with the disease for 3 to 20 years with the average length of time being 8 to 10.
  • 63% of Alzheimer’s caregivers are at risk of dying before any other caregiver caring for someone with a fatal disease.
  • Alzheimer’s disease does not need to be a pre-requisite for institutionalization, but that alternative care options should be available to our Alzheimer’s families.  We want to keep loved ones at home for as long as possible. 

Alzheimer’s Community Care is not a government agency.

Alzheimer’s Community Care is a local, private not-for-profit organization whose budget is comprised of 37% government funding and 63% private donations. 

Alzheimer’s Community Care provides wrap-around specialized dementia specific services and resources for Alzheimer’s families.  We save the state millions of dollars annually.

Alzheimer’s Community Care is community based, resourceful, and resilient when challenges are presented.  We are there when other social service agencies discharge patients because “they cannot benefit from their programs.”  These discharges place a large burden on the family. 

That is not acceptable.

Alzheimer’s Community Care’s dementia specific specialization that will inherently make the state a more prudent purchaser of services, ensure fiscal predictability, and sound financial management outcomes that are humane and dignified for those who justly deserve these considerations.

Please join me this year in advocating for statewide reform so that the right care can be available for all of our loved ones living with Alzheimer’s disease and dementia disorders.

A Time to Share

It’s become a tradition at Alzheimer’s Community Care to spend time with friends old and new during our Annual Board Meeting and Holiday Open House.  It is always a special treat to see our community partners who stop by to spread holiday cheer, many of these partners have been with Alzheimer’s Community Care since our beginning.

As the holidays fast approach, I ask that you take just a few minutes to reflect on the year.  Especially if you are a caregiver of a loved one living with Alzheimer’s disease or a related dementia disorder.  So many times do we get caught up in the demanding daily routine of caregiving, usually putting our own needs behind everyone else’s.  This is a season to be thankful for many things, but mostly to be thankful for each other.  I am thankful for each of our dedicated friends in the communities we serve, for each family for whom we make a difference, and for each day that I get to spend with you.

Let us share the season together, wherever you may be. 

Wishing you and yours a very warm and loving holiday,

Mary M. Barnes, President & CEO

Stay Alert for Silver Alert

This past June and July have been the busiest months I have experienced in a long while.

The time when summers in South Florida were known as quiet is a thing of the past, just like the Brownie camera. Our team has been absorbed with the responsibility of mailing Silver Alert training modules to all 400 law enforcement agencies in Florida (please see http://www.alzcare.org to learn more about this project). We as an organization are most proud of our contribution to this state-level project, because it has a direct connection to and effect on all three counties that we serve (Palm Beach, Martin, and St. Lucie) and their participation in the Florida Silver Alert Program.

As a matter of fact, Palm Beach County is the most frequent user of the program because our law enforcement officers understand its purpose and how it helps our local families. The chances of getting our lost , cognitively impaired drivers home have increased dramatically because of all the successful outcomes. For more information on this program call 1-877-404-SILVER (7458).

Meeting John Travolta

In my advocacy work on behalf of this organization, I recently had the honor of meeting John Travolta and his lovely wife.  They are just as nice in person as you would believe them to be from watching their films.  I was hoping he would help us with the Silver Alert project, but his work schedule did not allow it.  He may have considered it if he was available; he’s just that kind of person. 

Which leads me to Silver Alert.  This has been going magnificently, thanks to the unselfish efforts of Teresa Vincent, Joan Reedy, Carrie Kufta, Ron Radcliffe, and of course Patsy Oram.  Others have also helped, which is why is has come to be such a significant milestone for us.  While we are honored to have contributed to its success, the real reward is all the lives the Silver Alert program will save.

Happy New Year in July

Alzheimer's Community Care

We are now closing out our fiscal eyar and planning for the next one.  All in all, this year could have ended worse than it did.  Financially, it was not our best year, as many of our other friends and partners in the area experienced.  But we did meet the challenges successfully.  I am looking forward to a much better year; we have grown as an organization and have made tremendous strides, mostly because of our great leadership team.

Our newest team members, Carrie Kufta, VP of Development and Randy Dale, CFO, joined our family this past fiscal year, and have been strong assets.  The members who have been with us for years, Ron Radcliffe, VP of Community Care Services, Kris Riedell, VP of Human Resources, have also greatly contributed to our success.  The other professional on our team, Patsy Oram, COO, is my right hand, making it all happen.  And our Board of Directors supports and appreciates what we do every day.

This past year, we sponsored an educational conference in June, and from what I hear, it’s still being talked about.  Our Palm Beach Gala was well attended in January, our Martin and St. Lucie county events were victorious, as well as the many other projects our team does each year:  11 Thanksgiving celebrations, 11 Caregiver Appreciation events, and the list goes on.

As our fiscal year ends, we wish our friends and staff a “happy new year,” and look to our new fiscal year with excitement. 

Friends from the Conference, June 2010