Advocate

As Alzheimer’s disease threatens to bankrupt families, businesses and our healthcare system, scientists are coming closer to finding better treatments that could drastically alter the course of the disease. Now is the time to join us and speak up for the needs and rights of people with Alzheimer’s and their families, and help persuade Congress to address those needs through legislative action.

Alzheimer’s Orange County invites you to become an Alzheimer’s advocate. Join us and speak up for the needs and rights of people with Alzheimer’s disease and their families.

Ongoing Advocacy Efforts

Below are some of the issues we are working on right now:

Federal Action

State Action

Recent Advocacy Efforts

Below is a brief overview of some of the policies and initiatives that – aided in part by our grassroots advocacy – are now taking effect

Federal Level

State Level

What is an Advocate?

Alzheimer advocates play an important role in improving the quality of care and quality of life for people with Alzheimer’s disease and their families by working to improve dementia care and services; improve access to community-based care; improve quality care in residential settings; and expand funding for research and public programs serving people with dementia.

As an advocate, you will:

  • Receive regular updates about current legislative and public policy issues
  • Stay on top of policy and legislative issues through alerts and updates
  • Make calls or write to legislators to forward public policy priorities to improve quality of life for those living with Alzheimer’s.

For more information on how you can get involved, contact Jackie Mark at 949-955-9000 or email jackie.mark@alzoc.org.

Ongoing Advocacy Efforts

Below are some of the issues we are working on right now

FEDERAL ACTION

  • Seeking $400 million Increase for Alzheimer’s Research
    Working as part of our LEAD (Leaders Engaged on Alzheimer’s Disease) national coalition, we have urged Congress to appropriate an additional $400 million annually through the National Institutes of Health (NIH) for Alzheimer’s-related research. If approved, federal Alzheimer’s research spending would be more than $1.3 billion each year! You can see our letter of support here
  • RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregivers Act
    Working with the LEAD coalition, we’re advocating for creation of a national Family Caregiving Advisory Council to assist the federal Department of Health and Human Services (HHS) to better support caregivers.  You can see the entire bill here
  • Caregiver Training Proposal
    Working as part of a national coalition encouraging the Centers for Medicare & Medicaid Services (CMS) to implement a pilot program to support family caregivers of those with Alzheimer’s disease and related dementias to keep them in their homes longer
  • Missing Alzheimer’s Disease Patient Alert Program 
    Working as part of our LEAD coalition, advocating for reauthorization of the federal program that provides training & education for first responders (law enforcement, fire, emergency officials) to help prevent and improve responses to those with Alzheimer’s disease or other dementias (as well as the developmentally disabled) wandering off

STATE ACTION

  • Increasing Access to Caregiver Respite (Senate Bill 1377)
    • Asking the state to increase funding to its own Caregiver Resource Centers (CRCs) – funding that has been stagnant since the drastic cuts brought on by the recession.
    • This funding increase would give caregivers more hours of respite to help them better take care of themselves
    • On April 6th, the bill passed out of the Senate Health Committee unanimously and now moves onto the Senate Appropriations Committee.  You can read more about the bill here
  • Preserving CalQualityCare.org
    Asking the state of California to assume control and manage this uniquely valuable online resource for families seeking information about long term care facilities and service providers throughout the state.  Check out the website’s capabilities for yourself here

Recent Advocacy Efforts

Below is a brief overview of some of the policies and initiatives that – aided in part by our grassroots advocacy – are now taking effect

  • FEDERAL LEVEL

    • Historic Alzheimer’s Research Funding increase
      • $350 million increase for Alzheimer’s-related research through the National Institutes of Health goes into effect fiscal year 2017
      • Brings total NIH funding for Alzheimer’s-related research to $932 million

     

    • Older American’s Act Reauthorization
      • Last month, our advocacy in conjunction with our LEAD coalition partners and other national groups helped persuade Congress to reauthorize the OAA for an additional three years
      • Reauthorization means the vital programs & social services for seniors and their families that OAA provides – covering everything from meal delivery to respite care, modernizing senior centers to evidence-based health promotion programs – are now secure and will be funded appropriately

STATE LEVEL

  • Hospital Discharge & Family Caregiver Planning (Senate Bill 675)
    • Effective January 1, all California hospitals are now required to ask patients if they wish to include a caregiver (family member or friend) in their discharge plan
    • Is an important change for individuals with dementia, as often hospitals discharge a patient home, to the community or to a skilled nursing facility without including a loved one in the discussion or instructions
    • Alzheimer’s Orange County is working with hospitals and health plans to make this law’s implementation as impactful as possible

 

  • Training for Direct Care Staff at RCFEs (Assembly Bill 1570)
    • Effective January 1, took effect in all 7,500 of California’s Residential Care Facilities for the Elderly (RCFEs), where at least one in three and as many as half of all residents have dementia
    • Applies to board & care homes and assisted living
    • All direct care staff are now required by law to have 6 hours of dementia training before any contact with residents; 6 hours of additional dementia training within the first four weeks of employment; and 8 hours of ongoing annual training after the first year on the job

 

  • Dementia Cal MediConnect / Coordinated Care Initiative
    • Working to renew and expand upon our seven-county pilot project to coordinate and improve health care for those eligible for both Medicare and MediCal.
    • Working closely with major health plans, the state Department of Aging and other key stakeholders to further integrate Alzheimer’s & dementia care best practices into the overall care that “dual eliglible beneficiaries” receive across the state of California

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