How do aging caregivers plan for the future?
Aging caregivers understand that caring for our loved ones is a task primarily driven by the deep affection we harbor for them. Yet, this task is far from easy and often requires immense sacrifice, with no tangible compensation beyond the fulfillment derived from witnessing the accomplishments and well-being of those we care for. This challenge is particularly significant for families who have members with autism spectrum disorder (ASD).
Despite the broad range within the spectrum, each individual with ASD presents unique challenges, particularly non-speaking individuals or those with special needs that will require lifelong care.
Knowing that your child or loved one requires constant attention not only raises concerns about their future but also impacts the professional and economic growth of parents and caregivers. It often leads to isolation and has detrimental effects on both physical and mental health.
According to data from AARP, approximately 38 million people in the United States provide care for their loved ones, with the value of care provided by unpaid family caregivers estimated at $600 billion in 2021.
In this blog post from ABA Centers of Florida, we aim to shed light on the challenges encountered by aging caregivers. We emphasize their significance and the profound impact they have on American society. Additionally, we will answer the question: How do aging caregivers plan for the future?
Statistics on Aging Caregivers
As per AARP, a significant 71% of family caregivers maintain full- or part-time employment. However, aging caregivers are susceptible to substantial financial risks, including loss of income, missed job opportunities, and depleted savings, which subsequently result in diminished Social Security and retirement benefits.
Data from the Centers for Disease Control and Prevention (CDC) reveals that 23.2% of Florida adults aged between 45 and 63 are caregivers for friends or family members. Furthermore, one in three caregivers dedicate more than 20 hours per week to caregiving. This demanding task can take a severe emotional and physical toll. The CDC study indicates that 53% of caregivers acknowledged their deteriorating health hampers their ability to provide care, leading to mental distress, unhealthy days, and sleep deprivation. Additionally, in Florida, 43.3% of respondents reported having two or more chronic illnesses.
The pandemic in 2020 led to a shortage in the direct care workforce, resulting in increased caregiving hours and escalated intensity of care provided by family caregivers. Although researchers projected that the workforce would expand from 4.6 million to 5.9 million by 2028, the challenge remains in retaining workers in a field with an average annual turnover rate of 40 to 60 percent and ensuring they receive adequate pay and training.
Coping Strategies for Aging Autism Caregivers
A Sage Journals study examined coping strategies and barriers related to caring for adult children with autism, identifying seven key themes:
- Faith and Spirituality: Many caregivers stated that a relationship with God was a valuable coping resource, providing a hopeful and reflective perspective.
- Physical Activity and Exercise: Engaging in physical activity, such as walking and yoga, helped many parents take care of themselves and relieve stress.
- Intrapersonal Coping: Strategies such as self-compassion, meditation, writing, gratitude, and humor helped balance personal and adult ASD caregiving needs.
- Work: Paid employment was both a positive and negative strategy, providing a healthy routine for some, as well as personal, financial, and social benefits, but presenting challenges for others.
- Acceptance: Despite the natural difficulties and frustrations that may arise for aging caregivers, adopting an accepting attitude toward the child and the level of severity of autism was mentioned as crucial for parents.
- Reliance on Social Support: Learning to release some of the responsibility and accepting help from others is another form of coping used by aging parents of adult children with ASD. Family, support groups, and respite care are among the options most valued by parents.
- Emotion-Focused Coping: Some parents used emotion-focused strategies, such as avoidance or denial, to reduce the stress associated with caregiving.
Coping strategies such as faith, physical activity, self-compassion, and acceptance were helpful for many parents in providing stress relief through internal focus and external support. In addition, some strategies, such as physical activity, provided an outlet for stress relief. On the other hand, some parents use emotional strategies to avoid the stress associated with their adult children’s behaviors. However, these tactics may be less effective in the long term in the day-to-day management of caregiving.
Accessing Support with ABA Therapy
Owing to the increasing national awareness of ASD in children, recent regulations have incorporated Applied Behavior Analysis (ABA) therapy into a list of treatment methods covered by various health insurances, including Medicaid for those under 21. Some legislators are furthering these efforts by introducing ASD-specific programs that broaden services and offer benefits such as respite care and limited reimbursement to family caregivers. However, long waiting lists often hamper families’ access to this care. Recognizing the crucial importance of early intervention and timely attention to the needs of those with autism, we at ABA Florida have significantly reduced wait times to just weeks or even days.
The ABLE Act and the Autism CARES Act address financial and educational concerns, respectively, acknowledging family caregivers as an essential part of the patient’s care unit. According to the AMA Journal of Ethics, physicians and healthcare professionals across all states are now able to code ABA as Early Detection, Diagnosis, and Treatment (EPSDT) services, as required by the federal government.
Numerous state legislatures have enacted autism-specific insurance mandates. These mandates require various health insurance companies, encompassing for-profit, commercial, state-regulated Health Maintenance Organizations (HMOs), and non-profits, to cover medically necessary, evidence-based treatments for certain groups of individuals. Although some state laws provide more comprehensive eligibility and coverage criteria than others, most state mandates insist on coverage until the patient reaches a specific age, typically between 19 and 22. While these laws facilitate access to ABA therapy, which is integral to the development of children with autism, upon reaching the age limit for this benefit, aging caregivers must continue with the task of full-time care of their loved ones.
Considering that family members often act as primary caregivers for individuals with ASD, it stands to reason that a decline in the mental or physical health of a family caregiver could affect patient outcomes. By emphasizing clearly defined reimbursements, ASD-specific education, training, and other significant benefits for family caregivers, we can enhance their direct involvement and improve overall outcomes.
Why We Should Care More About Aging Caregivers
In the future, with the increase in the older population and the decrease in younger people, caregiving for older adults with disabilities will increase. Currently, about 17% of the U.S. population provides daycare, and with the growth of autism cases, many caregivers will be older adults caring for individuals with ASD or other developmental disorders.
Caregivers in distress face a variety of adverse outcomes, including burnout, declining mental and physical health, problems in social and family relationships, and an increased risk of death. These outcomes also impact the person in the caregiver’s care, underscoring the urgency of protecting aging caregivers from economic insecurity and physical and mental health problems.
It is essential to create work environments that are more adaptable to caregiving responsibilities and offer better access to paid leave and benefits to support informal caregivers. For instance, workplaces should provide options to work from home, flexible working hours, financial assistance for medical expenses, and health insurance that covers the family, including care for individuals with ASD. Support is essential in the lives of aging caregivers, as at some point, we will all need someone’s care, underscoring the importance of looking out for their well-being.
ABA Centers of Florida and ABA Therapy
At ABA Centers of Florida, we work daily to improve the quality of life for individuals with autism and their families. We offer services in Doral, Miramar, Port Saint Lucie, Tampa, Orlando, Boca Raton, Melbourne, Davenport, Kissimmee, and Bradenton, including autism diagnosis, early intervention, and in-home ABA therapy for children, adolescents, and adults.
Our expert, ABA care therapists, develop customized plans to teach essential life skills and decrease challenging behaviors, allowing those on the spectrum to gain independence and ease the burden on their caregivers. We recognize the importance of caring for caregivers’ health, so we’re here to help you reduce daily stress.
Call us at 772-773-1975 or contact us online to begin ABA therapies that will boost your child’s development and give you more time to take care of your health. Our team will manage the process with your health insurance.