Weekly column in the Washington Times Communities by Laurie Edwards-Tate

Family members often become caregivers to loved ones living with chronic and progressive conditions.

This is an especially acute problem where multiple sclerosis (MS) is concerned. MS is an unpredictable, disabling neurological disease that most often strikes people in the prime of their lives between the ages of 20 and 50, although it can also appear in young children, teens, and seniors.

The week of March 12 – 18 is MS Awareness Week. In the United States today, there are approximately 400,000 people with multiple sclerosis. Two hundred more people are diagnosed every week. As in other autoimmune diseases, MS is two to three times more common in women than men. Since women are frequently accountable for family responsibilities and management of the home, a diagnosis of MS can throw an entire household into disarray and despair.

Up to one quarter of individuals living with MS require long-term care services at some point during the course of the disease. Often, a family member steps into the role of primary caregiver, becoming one of the 65 million family caregivers that provide 80% of our nation’s long-term care.

Family caregivers provide critical support that enables the person living with MS to remain at home and avoid premature admission to costlier institutional settings. Despite the many benefits of family caregivers, it can be a stressful and draining job.

According to a 2011 National Alliance for Caregiving (NAC) survey, family caregivers spend 24 hours per week on average providing care to people living with MS. Additional survey results reveal that two-thirds of caregivers were emotionally drained. One-third suffered from depression, one in four could not focus at work and more than one in five caregivers have lost a job due to caregiving responsibilities. Sixty-six percent of respondents said respite care would allow their care recipient (often a loved one) to live at home longer.

Respite care provides short-term professional help widely needed to give caregivers the relief necessary to maintain their own health and promote family stability when caring for others.

Respite care and other support programs are in part provided through fundraising programs such as “Walk MS” events held nationwide in April and May, including the one I will participate in with “Team AYHFamilycare” at LEGOLAND California in Carlsbad, California on April 22. Walk MS makes a real difference to the Americans and their families living with multiple sclerosis.

But it is not nearly enough to meet the overwhelming need.

The Lifespan Respite Care Program (LRCP) is intended to expand and enhance services for family caregivers in statewide respite programs, improve coordination of services between available programs, improve access to caregivers by streamlining the delivery of planned and emergency respite services and improve the overall quality of respite services currently available.

President George W. Bush signed into law the Lifespan Respite Care Act in 2006. The LRCP provides competitive grants to state agencies working in concert with Aging and Disability Resource Centers and non-profit state respite coalitions or organizations to make quality respite available and accessible to family caregivers through the establishment or enhancement of State Lifespan Respite Systems.

With this funding, states provide planned and emergency respite services, train and recruit workers and volunteers, provide information to caregivers about respite and support services, and assist caregivers in gaining access to services.

The program serves families regardless of special need or age—literally across the lifespan. The problem with so much of existing respite care is age eligibility requirements. Because MS is typically diagnosed between the ages of 20 and 50, LRCPs are often the only open door to needed respite services. Currently more than one-third of the recipients (28%) are under age 50. The need for respite care does not discriminate by patient age.

The LRCP offers so much promise to people living with MS and their families, but has been woefully underfunded. While the law was authorized at $30 million in FY 2007, $40 million in FY 2008, $53.3 million in FY 2009, and $71.1 million in FY 2010, the program received no appropriation in FY 2007 and 2008. None! It received just $2.5 million annually the last three years. Thirty states have received grants and implemented LRCP programs.

Providing $50 million for the Lifespan Respite Care Program in FY 2012 would allow all 50 states to meaningfully implement Lifespan Respite and be able to better support our nation’s family caregivers. This is a drop in the bucket of the federal budget, with direct impact that would improve the lives of millions of people. The National MS Society is urging Congress to pass H.R. 3266, which will provide $5 million for the Program in the FY 2013 Labor-HHS-Education appropriations bill.

Family caregivers generally have higher mortality rates, rates of acute and chronic conditions, and depression. More than half of caregivers of those living with MS reported they needed help or information to find more time for themselves and ten percent were unable to work due to caregiving responsibilities.

Respite, the most frequently requested support service, has been shown to provide family caregivers with relief necessary to maintain their own health, bolster family stability, keep marriages intact, and avoid or delay more costly nursing home and other facility-based placements.

In an election year, it is critically important to communicate with your elected representatives, as well as candidates for the Senate and the House of Representatives, and let them know funding for this program is a priority to you. They are in listening mode and your voice counts more than ever. Urge their support for H.R. 3266.

In the meantime, support fundraising efforts such as Walk MS in your own community. Your donation no matter the amount could mean the world to a family affected by MS.

Until next time, enjoy the ride in good health!

LifeCycles is intended to provide inspiration and information only. If you are considering any health, dietary, exercise or lifestyle changes based on the information provided here, please seek advice from a qualified professional.
Laurie Edwards-Tate, MS, is President and CEO of At Your Home Familycare in San Diego, California. In addition to her positions as entrepreneur, health care executive, educator, radio segment contributor and media guest, Edwards-Tate is also a wife, daughter, and dog lover. Read more  LifeCycles in the Communities at The Washington Times. Follow At Your Home Familycare on Facebook and on Twitter @AYHFamilycare.
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Copyright © 2012 by At Your Home Familycare

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