By Michael Rock
Caring for an individual with an intellectual or developmental disability is often a challenge. Whether it’s addressing their unique educational needs or ensuring they’re housed and given the attention they need once they reach adulthood, the day-to-day care required can be stressful for their families or other caregivers.
A recent study conducted by San Antonio’s Krankosky Charitable Foundation, believed to be the first of its kind in the United States, profiled adults with autism and intellectual disabilities in Bexar County, Texas. Its findings are a legitimate cause for concern, including that about 22,000 adults in the county have such disabilities.
Out of the 22,000 or so, 90% are not receiving the coordinated care that they need. Out of those that are getting such help, 83% live at home with a caregiver. In order to get relevant waiver-funded support, caregivers in the county may have to wait as long as fifteen years. The cost to provide all of them with the help they need across their lifetimes is as much as $44.4 billion.
Complicating matters is the fact that there is no one size fits all approach to addressing the needs of those with developmental disabilities and their families, and that proper accommodations vary from individual to individual based on such factors as severity of disability, comorbid conditions, and social supports.
Stress is common among caregivers, with one study suggesting that as many as 95 percent of caregivers experience it. Out of those 95%, the stress levels of about half are especially high.
Signs of caregiver stress can include moodiness or sadness, increased frequency of crying, reduced energy, a sense of a lack of time to oneself, sleeping difficulties or reluctance to get up in the morning, overeating or under eating, reduced interest in hobbies or other activities, and anger.
Different factors can impact the extent of stress, depression, and self-esteem that caregivers of people with developmental and intellectual disabilities may experience. Older, unemployed women with limited income who care for those with such conditions are especially vulnerable to stress and depression. Caregivers may be more susceptible to such negative emotions when those in their care are profoundly disabled men in their forties and older, particularly if they have spinal cord injuries.
Despite these challenges, children with intellectual and developmental disabilities are more likely to excel in school, work, and at independent living when they grow up if their parents expect and encourage them to be the best they can be.
Fortunately, education about relevant available services can help both alleviate caregiver’s stress and better enable them to ensure those in their care get crucial assistance.
A 2014 study conducted by the Kennedy Center at Vanderbilt University suggested that parents of children with developmental and intellectual disabilities can reduce their stress levels and increase their emotional well-being through intensive breathing and meditation exercises as well as mitigating their worry, pessimism, and guilt by performing exercises to increase their senses of gratitude, mercy, hopefulness, and grace.
Other ways caregivers can address their stress levels include breath awareness, mind-body practices such as tai-chi and yoga, maintaining healthy eating and sleeping habits, and socializing with other loved ones.
AABR, headquartered in College Point, Queens, is an organization dedicated to providing people with developmental disabilities of all ages and backgrounds from all five boroughs of New York City with the services they need. To help ease caregiver stresses, AABR oversees residences and day habilitation programs for adults, employment training through the Pathways to Employment program, Saturday respite and recreational programs, a drop-in center, and other family services. More information on AABR’s host of services can be found here.
AABR is committed to allowing those with developmental and intellectual disabilities to be the best they can be, and to relieve much of the stress their caregivers often experience.
Michael Rock is a New York City-based reporter and self-advocate with autism. A graduate of Brandeis University, his work has appeared in Kings County Politics, Chelsea Now, Our Town, Queens County Politics, and WhoWhatWhy.