Advocate

Pictured Above Kansas City Advocacy Rally - Advocate Charlie Miller with Missouri Representative Craig Bland and Dr. Melvin McFarland.

December Advocacy Program:

Finding Purpose in Advocacy

Please join us for the education program, Finding Purpose in Advocacy.  Learn to use your Alzheimer's experience to be a strong advocate for good public policy at the local, state, and federal level.  We will also share public policy updates for Kansas and Missouri. 

Event Details:

  • Date: Thursday, December 4, 2014
  • Time:10:00am-12:00pm
  • Where: Heart of America Chapter Education Center- 3856 W.75th, Prairie Village, KS
  • RSVP: Call 913-831-3888 or e-mail kjones@alz.org

Mark Your Calendars for the Missouri Coalition of Alzheimer's Association Chapters' 2015 Memory Day.

 Memory Day is the longest-running and successful Alzheimer's advocacy event in Missouri and across the Nation.  Memory Day offers participants an opportunity to meet other Alzheimer's advocates from across Missouri as well as share their personal stories and concerns related to Alzheimer's disease with their state elected representatives.

Event Details:

  • Date:     Wednesday, Febuary 18
  • Time:    11:00-3:30
  • Where: Jefferson City Capital
  • RSVP:  913-831-3888 or kjones@alz.org 

Advocacy Update: National Alzheimer's Plan, Help Make it a National Priority

The Alzheimer's Association commends the Obama administration for developing the country's first-ever National Alzheimer's Plan released May, 16 2012. The development of the plan is a result of a mandate within the National Alzheimer's Project Act that was passed unanimously through bipartisan congressional support and signed into law by the president last year.

"This is a strong plan that promises important progress when implemented," said Harry Johns, president and CEO of the Alzheimer's Association. "For all Americans — not just the more than 5 million living with Alzheimer's and their 15 million caregivers today — this plan is an historic achievement."

View the National Plan to Address Alzheimer's Disease

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.  

Join the cause

The Alzheimer’s Association Heart of America Chapter invites you to become an Alzheimer advocate. Join us and speak up for the needs and rights of people with Alzheimer’s disease and their families.

Add your voice to ours — become an advocate today.

Act Now


Missouri advocacy

 

MO COALITION OF ALZHEIMER’S ASSOCIATION CHAPTERS

platform for 2015 legislative sesison

Alzheimer’s Grants

For the past seventeen years, the Missouri General Assembly has appropriated funds for Alzheimer’s Grants. Through the Missouri Coalition of Alzheimer’s Association Chapters, these funds have been used to develop and expand programs such as respite assistance, dementia training, caregiver education, and rural outreach.

Funding forAlzheimer’s Grants funding was doubled by the General Assembly in 2006 to $540,000, reduced by 70 percent in 2010, then in 2014, increased to $500,000.

Last session for the FY15 budget, the General Assembly approved $625,000 with $450,000 for respite assistance.  The balance of $175,000 was designated for caregiver training that includes in-home visits. This funding has historically gone to another organization.

Due to the state’s revenue shortfall, Governor Nixon cut all the Alzheimer’s Grant funding from the DHSS budget for FY15. $500,000 he withheld and new funding of $125,000 he vetoed.  The latter veto was recently overturned by the General Assembly.  The decision to release any or all of this funding now rests with Governor Nixon. 

Current status of respite assistance programs:  The St. Louis and Heart of America Chapters are tapping other chapter funds to help sustain those currently enrolled in the respite program.  This will not address the needs of the more than 140 families on the waiting list in St. Louis.  For families in the 58 counties served by the Greater Missouri chapter, the situation is more critical.  They have had to stop offering respite assistance and will be unable to resume without state funding.

Restore funding for Alzheimer’s Grants. Priority should be given to area of greatest need -respite assistance that supports families across Missouri that are caring for a loved one at home.

Designated Health Care Decision-Maker Act

Missouri is only 1 of 7 states that does not have a designated health care decision-maker type of law.  This law, which differs from the Durable Power of Attorney and Guardianship laws, fills a gaping void for individuals who need someone to make treatment decisions on their behalf, but do not have someone legally appointed to do so.

If a person is incapacitated, no one is legally authorized to make healthcare decisions on behalf of that individual unless a guardian or Attorney-in-Fact has been appointed.  Additionally, the individual appointed under a Durable Power of Attorney for Health Care possesses only that authority delegated under the document. 

Surprisingly few people have executed a Durable Power of Attorney designating someone to make healthcare decisions for them.   So, if someone becomes incapacitated and they lack such designee, his or her loved ones are legally required to go through the expensive and time-consuming process of obtaining guardianship of that individual in order to authorize medical treatment on his or her behalf. When a medical situation is urgent, but not emergent, the delay in obtaining court-ordered guardianship may jeopardize the patient’s health.  At present, physicians often consult with the patient’s family to obtain consent for medical procedures, but physicians who do this are actually acting outside the law.  Patients, families and healthcare providers need this law to allow for the treatment of those who have not made healthcare decision-maker arrangements yet.

Additionally, the guardianship process is costly, time-consuming (many rural jurisdictions only hear these cases once or twice a month), emotionally charged (even when all involved agree) and access to attorneys who handle these cases on a pro bono basis is extremely limited. 

A designated healthcare decision-maker is someone authorized by law to make healthcare decisions on behalf of a person who is incapacitated and who does not otherwise have an Attorney-in-Fact designated under a Health Care Directive (Durable Power of Attorney for Health Care) or Guardian appointed to make health care decisions on the incapacitated person’s behalf.  44 states that have these laws identify the designated decision-maker through a specific hierarchy of individuals identified in the law (beginning with the Attorney-in-Fact or Guardian, then spouse, adult children, etc.) with whom a healthcare provider would speak to obtain authorization for treatment for someone who lacks healthcare decision-making capacity.

Missouri Bar Elder and Probate and Trust law committees approved the language of the proposed bill and it has been sent to the Missouri Bar Board of Governors for approval.  Many diverse groups supportive in principle the proposed legislation including ALS Association, MS Society, Veterans Administration, VOYCE, and others.

 Policy Recommendation

Support proposed designated Healthcare decision-maker legislation that has been approved by the Missouri Bar Elder and Probate and Trust law committees. 

Kansas advocacy

Kansas COALITION OF ALZHEIMER’S ASSOCIATION CHAPTERS

State public policy platform

2015

Uniform Health Care Surrogacy Directive

While Kansas does have a law creating a designated health care surrogate to make decisions regarding participation in research, it is only 1 of 9 states that does not have a designated health care decision-maker type of law for health care decisions.  This law, which differs from the Durable Power of Attorney and Guardianship laws, fills a gaping void for individuals who need someone to make treatment decisions on their behalf, but do not have someone legally appointed to do so.

If a person is incapacitated, no one is legally authorized to make healthcare decisions on behalf of that individual unless a guardian or Attorney-in-Fact has been appointed.  Additionally, the individual appointed under a Durable Power of Attorney for Health Care possesses only that authority delegated under the document. 

Surprisingly too few people have executed a Durable Power of Attorney designating someone to make healthcare decisions for them.   So, if someone becomes incapacitated and they lack such designee, his or her loved ones are legally required to go through the expensive, time-consuming and potentially traumatizing process of obtaining guardianship of that individual in order to authorize medical treatment on his or her behalf. When a medical situation is urgent, but not emergent, the delay in obtaining court-ordered guardianship may jeopardize the patient’s health.  At present, physicians may consult with the patient’s family to obtain consent for medical procedures, but physicians who do this are actually acting outside the law.  Patients, families and healthcare providers need this law to allow for the treatment of those who have not made healthcare decision-maker arrangements yet.

Additionally, the guardianship process is costly, time-consuming (many rural jurisdictions only hear these cases once or twice a month), emotionally charged (even when all involved agree) and access to attorneys who handle these cases on a pro bono basis is extremely limited. 

A designated healthcare decision-maker is someone authorized by law to make healthcare decisions on behalf of a person who is incapacitated and who does not otherwise have an Attorney-in-Fact designated under a Health Care Directive (Durable Power of Attorney for Health Care) or Guardian appointed to make health care decisions on the incapacitated person’s behalf.  44 states that have these laws identify the designated decision-maker through a specific hierarchy of individuals identified in the law (beginning with the Attorney-in-Fact or Guardian, then spouse, adult children, etc.) with whom a healthcare provider would speak to obtain authorization for treatment for someone who lacks healthcare decision-making capacity.

Policy Recommendation

Establish a Uniform Health Care Surrogacy Directive. 

Federal advocacy

From Act to Action