Helping caregivers provide an invaluable service to those in need

How does one assign a value to the invaluable? This is a question I often find myself asking. How does one put a dollar amount to the emotional, financial and physical commitment of family caregiving? As the parent of an amazing 28 year-old son, Livingston, who has an intellectual disability known as Fragile X Syndrome, I have been in a similar place as many of the devoted family caregivers throughout this country. And like many of them, I would not trade those experiences for anything.

The idea of family caregiving is a far-reaching concept; many of us have been, currently are, or eventually will be a family caregiver or are likely to need the help of one in the future. Family members are the first in the line of assistance for most people, and they are the ones who often make it possible for older adults and individuals with disabilities to live independently in their homes and communities. In 2013, about 40 million family caregivers provided unpaid care valued at about $470 billion to adults who needed help with daily activities such as bathing, dressing, meal preparation and transportation. That amount is more than the total Medicaid spending for that year.

{mosads}My wife Sidney and I have been blessed with our son Livingston. He was one of the first graduates of Mississippi State University’s ACCESS Program for students with intellectual disabilities. He now works part-time at an incredible restaurant near our home in Mississippi and is in many ways self-sufficient. Although he has his own challenges — if you met him, you would simply want to take him home with you.

God has also blessed us with our daughter Maggie and our son-in-law Brett, who have been a God-send in helping take care of Livingston. Make no mistake about it, Sidney has been the one to do the heavy lifting when it comes to Livingston’s needs these past 28 years. Although Livingston is grown now, when he was young, we were in the same place as about 3.7 million family caregivers who provide care to a child under age 18 because of a medical, behavioral or other condition or disability. These family members take on care willingly and lovingly but face many physical, emotional and financial challenges.

The challenges that are placed upon these caring family members cannot be understated. Research on family caregiving over the past 35 years shows that family caregivers can encounter significant negative impacts on their own financial situation, retirement security and careers, as well as their physical and emotional health. Today, about 12 million people of all ages need these types of assistance. As we look to the future, by 2050, this number will more than double. It is imperative that we support family caregivers, and in doing so, we can help people live at home where they want to be, while helping delay or prevent more costly institutional care and unnecessary hospitalizations and saving taxpayer dollars.

During the 114th Congress, I, along with Reps. Kathy Castor (D-Fla.), Diane Black (R-Tenn.) and Michelle Lujan Grisham (D-N.M.), introduced the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act of 2015. This bipartisan legislation would implement that strategy by bringing together relevant federal agencies and others from the private and public sectors, such as family caregivers, older adults and persons with disabilities, healthcare and Long Term Support Services (LTSS) providers, employers, relevant industries, state and local officials, and others on an advisory council to advise and make recommendations. This approach would identify specific actions that government, communities, providers, employers and others can take in order to recognize and to better support these devoted family caregivers.

So I ask you again: How does one assign a value to the invaluable? How can we help those 40 million family caregivers provide such an invaluable service to those in need? Sidney and I thank God every day for giving us Livingston, Maggie and Brett. They are the light of our life and a gift from Him. We, like so many others, would do anything to care for them, and one day, they may in turn need to care for us. In the coming months, I plan to re-introduce legislation similar to the RAISE Family Caregivers Act of 2015 to provide support for all our loved ones in an effort to help ease the physical, emotional and financial burden for them and for the millions of loving family caregiving heroes across our great country.

Harper represents Mississippi’s 3rd District and is a member of the Energy and Commerce Committee. He is chairman of the Fragile X Caucus.

The views expressed by this author are their own and are not the views of The Hill.