BY ADEOLA SONAIKE, PHD, MPH, CHES
There are steps to assist you with selecting a local Respite provider that meets your family’s needs. Respite is your time as a caregiver for self-care, your time to respect yourself and your role as a caregiver.
Respite, which originates from the Latin word ‘respectus’, literally means consideration, the act of looking back (or often) at oneself. It is also no coincidence that ‘respectus’ is the Latin origin for the term, respect. For some, the idea of looking back with consideration and taking respite may not require any particular effort. To the 39.8 million family caregivers in the US, however, respite has become a lifeline. An opportunity for reflection and rest, respite services are available to the caregivers of individuals with support needs across the lifespan. This short-term break, which can either be planned or on an emergency basis, allows family caregivers to take intermittent breaks from their caregiving responsibilities. Respite can be provided in a variety of settings, including but not limited to: one’s own home, the home of a respite provider, a group home, a supervised apartment, day care centers, adult day programs, and camps.
The idea of having to search for respite providers may sound like a daunting task, however, including respite care into your families’ schedule can actually restore stability within your home. Caregivers often report returning to their caregiving responsibilities renewed and with a new pep in their step as a result of just a couple of hours of respite per week. “I feel closer to my son…because I have time to do my own thing and it helps me refill my cup with patience,” says a family caregiver. Respite care tends to be much more effective when combined with other services and supports, and is recommended during all forms of person-centered planning.
Trained respite providers deliver professional, safe, respectful and culturally competent care that continuously assesses and effectively responds to the needs of your loved one in a person-centered and empowering manner. Each state maintains a diverse pool of respite providers who have the skillset to meet the needs of the families. Irrespective of this, each family retains the right to select, hire and train their own preferred respite provider.
For some, healthy respite may include an hour of meditation and self-reflection. In an age where the practice of Mindfulness is recognized as a key tool to help people reduce anxiety, enjoy life in the moment, discover genuine joy, and to generally be present in mind, body, and spirit; it should come as no surprise why services such as respite care are so critical for caregivers today. Mindfulness teaches us to be present in the moment and self-aware. Acknowledging and accepting the roles we play in the lives of our loved ones, mindfulness teaches us to be aware of the impact that our presence or absence of self-awareness can have on those around us and on the daily choices we make. Respite creates a space in time where the quest for self-awareness as a caregiver is acceptable and encouraged.
Ninety-four percent of family caregivers have found respite to be a helpful resource, reporting improved physical health, improved emotional health and reduced stress when they have access to respite. During respite, you may find yourself getting some much-needed rest and relaxation, caring for personal needs, running errands, or engaging in social activities for enjoyment and enrichment. Respite is your time as a caregiver to put yourself first. Family caregiver: “The respite provides us with the relief not to get burned out, so that we can continue to care for (our loved one) in our home where we would like him to be.”
People are generally living longer lives, and the rates of seniors with multiple chronic conditions, disabilities and/or mental health conditions are continuing to rise. Today, more people than ever before are providing 24/7 direct care and support to a loved one. In many instances, an individual may find themselves playing the role of a caregiver during multiple phases of their lives, an example of this is becoming a caregiver for a parent who is part of the baby boomer generation, and then later in life becoming a caregiver for an aging spouse, a family member who is a veteran, or a child/grandchild who has a special need.
This dramatic rise in the number of unpaid family caregivers nationwide has prompted an increased recognition among policymakers (many of whom are very familiar with the daily roles of a caregiver) of the need for services and supports for caregivers. In September, the Senate passed the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017 (S.1028/HR.3759). The RAISE Act would require the Secretary of Health and Human Services to develop, maintain and update a national strategy to recognize and support family caregivers. The Act which will also encourage public input and participation, is now awaiting passage through the House of Representatives.
Similar activities have occurred at the state level, as the New Jersey Caregiver Taskforce Bill (NJ S2877/ A1463) which aims to evaluate caregiver support services in the State and provide recommendations for the improvement and expansion of such services, sailed through the Senate in June and is awaiting passage through the Assembly. The ultimate goal of each of these policies is to ensure that family caregivers are effectively supported in their critical role in the livelihood of a loved one. On October 11, 2018, The Family Resource Network will be putting such ideals to action by inviting health providers, innovators, and family caregivers to the National Caregivers Conference in Iselin, New Jersey. This conference creates a platform for you, the family caregiver, to speak directly to innovators in the health and technology fields as we work together to find solutions to the daily challenges faced by you and your loved ones. History has shown us that the continued commitment to the plight of all caregivers can truly result in the transformation of how we envision care. In 2006, Congress passed the Lifespan Respite Care Act which established coordinated systems of accessible, community-based respite care services for family caregivers of children and adults of all ages with special needs. These systems and support services are now accessed by millions of caregivers nationwide who recognize the importance of respite.
Respite is your time as a caregiver for self-care, your time to respect yourself and your role as a caregiver, your time to place your physical and emotional well-being first, your time for rest and, most important, it’s your time to reclaim. When you take the time to reconnect with self, you will find that the transformation in your energy signature will result in a greater sense of peace, compassion, empathy and love in action for you and your loved one.•
ABOUT THE AUTHOR:
Adeola Sonaike, PhD, MPH, CHES is the Senior Vice President of Health at The Family Resource Network, where she works to advance the health of people with special needs, chronic conditions, and family caregivers. Dr. Sonaike attended Rutgers University where she attained a Bachelor’s in Biology, and Walden University where she attained a Master’s in Public Health and a PhD in Public Health- Epidemiology. Dr. Sonaike is also a Robert Wood Johnson Foundation Culture of Health Leader.
The Family Resource Network (FRN) is a comprehensive, family-focused, organization designed to meet the growing need for community based programs and services for individuals and their families with continuing needs. For almost 50 years, FRN has helped thousands of New Jersey families with a variety of disabilities and chronic conditions connect with resources and support services they need to live full and happy lives. FRN’s network agencies are: Autism Family Services of NJ, Caregivers of NJ, Epilepsy Foundation of NJ and the Family Support Center of NJ. Please visit www.familyresourcenetwork.org for more information or call (800) 376-2345.
SEVEN STEPS TO ASSIST YOU WITH SELECTING A LOCAL RESPITE PROVIDER:
- Determine How Much Respite You Need. A great tool for this is the ‘Caregiver Self-Assessment Questionnaire’ which was developed by the American Medical Association
- Have A Discussion With Your Loved One, your care team and additional family members to jointly identify the type of respite care that will best suit your loved one:
a. In-home respite models include; home-based respite, sitter companion respite, and consumer directed respite
b. Out-of-home respite models include; host-family respite, respite-center based care, respite in foster or group homes, parent/family caregiver cooperative respite, hotel respite (respitality), hospital-based respite, camp respite, and adult day center respite
- Identify And Contact Your State Lifespan Respite Program or State Respite Coalition. The ARCH National Respite Network has a comprehensive State Respite Registry
- Determine A Suitable Payment Model for respite care by contacting your State Lifespan Respite Program or State Respite Coalition. Multiple payment models may exist in your state for respite including:
a. Medicaid Waiver
b. Medicaid State Health Insurance Plan
c. Medicare Hospice Benefit
d. Area Agency on Aging (AAA)
e. State funding through Family
Caregiver Support Programs
f. Veterans’ Health Administration
g. TRICARE’s Extended Care Health Option (ECHO) or the Military Exceptional Family Member Program (EFMP)
h. Long Term Care Insurance
- Choose/Hire A Respite Provider. Contact your State Lifespan Respite Program or State Respite Coalition to determine the training and licensing requirements for respite providers. There are two options for selecting your respite provider:
a. Hiring a respite provider on your own
b. Matching with an agency to hire and train a respite provider for you
- Prepare Your Loved One For Respite. Consider scheduling an orientation and initial supervised sessions with your respite provider so that your loved one may familiarize themselves with a new provider
- Plan To Make The Most Of Your Respite. When was the last time you as a caregiver went to see your (not your loved ones) physician for a Wellness Visit? We’ve all experienced those times when before we know it, two to three years have passed and we haven’t completed an annual physical.
Taking a healthy respite presents a great opportunity for you to put your health and wellness first for a change so that you may continue to provide care and support for your loved one.