Fighting for Family Caregivers

caregiving blog

Mike is a 55-year-old Mississippian and a family caregiver for his lifelong friend Joe, who suffered a stroke.  Mike has found more emotional strength than he knew he had when the reality hit that caring for Joe is a 24-hour-a-day job.

Nancy went from daughter to family caregiver, and after weeks of sleeping in her father's hospital room, stress-filled months and sleepless nights, she learned to rely on her siblings, make a plan and step back into her life.

Amy is an AARP expert on caregiving, juggling work and family.  She now cares for her father in her own home.  Until her mother passed away recently, both of Amy's parents lived with her. Family caregivers are all around us: friends, family members, acquaintances - ourselves.  No matter the situation, we face many challenges as we help aging parents and other loved ones live independently. The reality is: Every day family caregivers do remarkable things.   For example:

  • The majority provide an average of 20 hours a week of care.
  • Many still maintain a job outside the home.
  • Many more care for their loved ones 24 hours a day, seven days a week.
  • Family caregivers provide more than $450 billion in unpaid care annually.
  • They administer medicine and care, most often without any training.
  • They serve as accountant, cook, assistant, nurse, housekeeper, companion and in many other roles to care for their loved ones.
  • Family caregivers safely keep their loved ones out of costly institutional care, like nursing homes.

This is why AARP is fighting to make sure family caregivers have the support they need to safely help their loved ones stay at home. This year, AARP launched a new multistate caregiving advocacy campaign, with nearly every AARP state office involved.  Working with governors, state legislators, other policymakers and community partners, we're determined to advance policy options that will help family caregivers.  Two significant components of the campaign are:

The Caregiver Advise, Record, Enable (CARE) Act

Ten  AARP state offices are working to pass the  CARE Act CAREGIVING-CAREAct-OnePager-Design-NATIONAL 2-18-14through state legislation or regulation this year, with Oklahoma and Hawaii leading the way.

  • In Oklahoma, AARP fought successfully for 872,000 family caregivers, passing Senate Bill 1536 - the state version of the CARE Act. The measure was signed into law by Gov. Mary Fallin.
  • In Hawaii, the state legislature created a task force to explore the elements of the CARE Act, which would benefit 247,000 family caregivers, and determine the feasibility of introducing the bill in the 2015 session. The task force is due to report back to the legislature by January 1, 2015.

By passing the  CAREGIVING-CAREAct-OnePager-Design-NATIONAL 2-18-14  states will ensure that:

  • The name of the family caregiver is recorded when a loved one is admitted into a hospital or rehabilitation facility.
  • The family caregiver is notified if the loved one is to be discharged to another facility or back home.
  • The facility must provide an explanation and live instruction of the medical tasks - such as medication management, injections, wound care and transfers - that the family caregiver will perform at home.

For more on AARP's advocacy: AARP Announces 2014 Advocacy Agenda: Across the States

State Plan in Support of Family Caregivers

Last year  ArizonaIllinoisOklahomaTennessee and  West Virginia passed resolutions to better support and understand the needs of family caregivers. This year, 20 additional states are working to create a  State Plan in Support of Family Caregivers. Already,  Delaware, Mississippi, Hawaii, Indiana, Kentucky, New Mexico, South Carolina and Utah have achieved victories. The State Plan in Support of Family Caregivers:

  • Creates a joint committee to study family caregiving and the programs and services available to help seniors live independently, at home.
  • Identifies policies and resources available, as well as encouraging new and innovative practices.
  • Compiles an inventory of resources currently available.
  • Provides recommendations to the legislature and administration on how to improve support for family caregivers in the state.
Additionally, AARP is fighting to:

  • Make sure respite care programs are available so family caregivers who are on call 24/7 can take a well-deserved and needed break.
  • Establish workplace protections - like paid and unpaid leave and sick leave - so caregivers don't have to worry about being fired from their jobs when they need to take a few hours off to help their loved ones.
  • Provide for caregiver assessments so that the needs of family caregivers are incorporated into the care plans for their loved ones.
  • Expand the scope of practice for nurses so they are able to use their full training and potential, and allow for nurses to delegate certain tasks to family caregivers.
  • Create tax incentives for the services and support family caregivers provide for their loved ones.
  • Expand the network of services provided in homes and communities for those who are eligible for Medicaid and for all others.

If you are a family caregiver, you're not alone.

Follow me on Twitter  @RoamTheDomes for more news on caregiving and other advocacy across the country.

11/12/14 CARE Act Update: 
Oklahoma:  On November 1st, 2014, Oklahoma became the first state in the nation to enact the CARE Act.
Hawaii:  The state legislature created a task force to explore the elements of the CARE Act and determine the feasibility of introducing the bill in the 2015 session. The task force is due to report back to the legislature by January 1, 2015.
New Jersey:  The CARE Act passed the State Senate and State Assembly, without a single no vote, and is now awaiting Gov. Christie’s signature.

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