The RAISE Family Caregiver Council: My experience, our opportunity

Posted by Reeve Staff in Daily Dose on December 10, 2019 # Caregiving

If you are a caregiver to a family member living with paralysis, you will want to read this article. If you yourself receive care from a family member, you will definitely want to read this article. If you are directly or indirectly impacted by the paralysis community and/or serve people living with paralysis, this article will benefit you too.

My name is James Murtha. 5 years ago, I crashed my mountain bike resulting in a spinal cord injury: C4 incomplete quadriplegia. Since then I have tried to take every opportunity to grow through or give back to the spinal cord injury/paralysis community. I volunteer with the Christopher & Dana Reeve Foundation’s Regional Champions advocacy program. Through my service, I was lucky enough to be nominated to join the Family Caregiver Advisory Council (FCAC). My nomination was accepted, and I became part of the first ever FCAC. Author James Murtha

In 2018, Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act to better support family caregivers. Part of this law required forming the FCAC. This FCAC, with government and nongovernment members, is tasked with creating the country’s first national Family Caregiver Strategy.

As somebody living with paralysis, being a part of the FCAC is huge to me. My parents have provided caregiving duties for me. Since leaving the hospital after my injury, I have received services from Medicaid. I have slowly become more and more self-sufficient and moved out into my own apartment just over a year ago. Unfortunately, Medicaid reimbursement processes and wage rates are not enough to incentivize quality caregivers as well as quality agencies to take care of physically vulnerable people reliant on the system. Too many times, my parents bailed me out when agencies could not staff my schedule requests or filled in backup if the caregiver didn’t show up to their shift. As my parents age, I grow more concerned over preserving their health and well-being, especially when it comes to these situations.

This past year, I have met with local state representatives and senators to push for better homecare policies, from better reimbursements to constituent/consumer representation. These meetings, from scheduling to follow up, involve a lot of back-and-forth and the process requires much willpower. Being a part of the FCAC feels like a dream come true opportunity to improve the caregiving outlook at a higher, overreaching level. And it all began in August…

The first ever FCAC meeting was held at the Washington, DC Holiday Inn in August. The first day began with an ethics training, followed by an induction ceremony. The remainder of the first day and part of the second day involved learning about many, many different types of agencies, organizations, and programs that support family caregivers. Obviously, considerate time was conscientiously put into accumulating these resources. I highly encourage you to go to the website for the RAISE FCAC, where you can find out about all of these resources by reviewing media from our inaugural meeting.

The Raise Family Caregiver Council, 2019The remainder of the second day of meetings was when the council members were called to action. The hotel ballroom had been turned into a governmental conference space, with a podium and presiding over tables arranged in a large rectangular pattern, and a microphone at every table for council members to use. There was even a 360° rotating camera for the online streaming/recording of the meeting. It was something else.

The council member meetings were very positive. People cooperated well and held a productive conversation. Eventually, council members split into various subcommittees, responsible for coming up with proposed solutions for particular aspects of family caregiver support. Subcommittees will meet every month and the entire Council will meet 3 to 4 times a year. According to the law, the FCAC has until January 2021 to produce a final strategy.

Members of the public are welcome to view future meetings and links will be available for you to participate. In addition to the other resources mentioned before, the National Academy for State Health Policy (NASHP) has created a webpage, the RAISE Act Family Caregiver Resource and Dissemination Center, to support council members and people like yourself who want to be involved. Additionally, you can directly contact the council administrators through this email address: [email protected]

For those of you who want to see positive change in your behalf or your family member’s behalf as well as have your voice heard, the FCAC is presenting the opportunity for you to proactively influence the future of support to you and millions more. Please consider filling out the RAISE Family Caregiving Advisory Council survey.

Important Links: RAISE Family Caregiving Advisory Council

Input needed: RAISE Family Caregiving Advisory Council

Request for information document

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.