March Caregiver Connection: The Importance of Advocacy

The Alzheimer’s Association has made major impact its services and education for caregivers, funding for research, and dedication to enhancing awareness of this sinister illness.  However, we know that we’ll need the support of our state and national governments to truly change the course of this disease.

That’s why advocacy is another central part of our mission.  We work to inform representatives about the financial and human cost of Alzheimer’s so that they can make it a priority for legislation.  But we need you, the caregiver, to add your voice.

On April 2, 2015, we invite you to join us for Advocacy Day at the Texas State Capitol.  People across the state of Texas whose lives have been touched by Alzheimer’s will have the opportunity to meet with their legislators to urge them to support initiatives to enhance support for caregivers and quality of care for people with dementia.

Learn more about our policy priorities for 2015:

Maintain Medicaid Access for persons with Alzheimer’s Disease or other dementias.

Medicaid provides health services, nursing home care, and various home- and community-based services.  Our goal is to illuminate for Texas legislators the extent to which Texans living with dementia and their families rely on this program.

Improve Adult Guardianship Jurisdiction
Currently, the United States has over 50 different adult guardianship systems, and no channel exists for Texas courts to communicate with courts in other states about issues pertaining to guardianship. Uniform Adult Guardianship legislation would facilitate communication to determine the appropriate court to oversee the guardianship process, avoiding unnecessary financial and emotional challenges for families.

Assess Caregiver Burden in the 2016 Texas Behavioral Risk Factor Surveillance System Survey (BRFSS).

Through the BRFSS, the CDC enables states to collect important data on the impact that Alzheimer’s disease and other dementias have on the population.  We support inclusion of the Caregiver Optional Module in the 2016 BRFSS, so the report reflects the financial, physical, and medical ramifications for those who take on the responsibility of caring for a person with dementia.

Improve Dementia Training
It is of the utmost importance that first responders and law enforcement officers receive adequate training to recognize, assess, and appropriately respond to the symptoms of Alzheimer’s disease and other dementias.  We support dementia training standards for first responders and law enforcement.

With your help, we’ve already made great strides:

Past federal successes include:

  • The first-ever National Alzheimer’s Plan was released by the administration in May of 2012.
  • In 2011, one of the Association’s top legislative priorities, the National Alzheimer’s Project Act (S.3036), was signed into law.
  • In 2010, the decennial Healthy People report included objectives for Alzheimer’s and other dementias reflecting and underscoring the growing public health threat they pose to the nation.
  • In 2009, helped pass legislation in more than 20 states that brought together individuals with Alzheimer’s, state agencies, legislators, care providers and caregivers to develop and implement comprehensive State Government Alzheimer’s Disease Strategic Plans.

At the state level, the Capital of Texas Chapter has:

  • Participated on the Texas Alzheimer’s Disease and Related Disorders Council
  • Supported the for the formation and funding for the Texas Alzheimer’s Research and Care Consortium, a state-funded research collaborations between five major Texas universities. txalzresearch.org
  • Participated in the development and implementation of the 1st Texas State Plan on Alzheimer’s disease. http://www.dshs.state.tx.us/alzheimers/default.shtm

Join us to keep Texas at the forefront of the fight against Alzheimer’s.  Advocacy Day will be held this year on April 2nd, 2015.  For more details and to register, contact Rachael Smith at (512) 241-0420 x 12, or [email protected].

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