According to the Center for Disease Control and Prevention website,15.1% of all children and 1 out of 5 households have a child who has some type of special health care needs (chronic, physical, developmental, behavioral, or emotional conditions and who also require health and related services).
In 2016, the national average for those living with disabilities was 12.8%, in Kentucky (my home state) alone this number was 17%. These statistics of course inform us about individuals living with the disability, however I want to change the focus to their parents. Has it ever crossed your mind that there is a significant amount of our population parenting those with disabilities?
Let’s focus our attention in this blog to the direct health of parents raising children and adults with different needs, health related issues, and a variety of disabilities. Just like the parents themselves, society follows suit and focuses attention and support to the individuals with disabilities. However, the parents and caregivers are the greatest resource for these individuals. We should place their health at the highest priority, due to this alone, but are we?
In doing research for this article, I was amazed to only come across two articles from 2005, reflecting health statistics on the subject of parents raising both children and adults with disabilities. Neither article presented a snapshot into their lives as a caregiver and the potential impact of raising a child with a disability has on their overall health. However, through my personal experience with my own parents, as a Special Education Teacher, and founder of Puzzle Pieces (www.puzzle-pieces.org) , I have spoken to hundreds of families raising children with special needs and I know health concerns exist. Parents fear for their mental and physical health and long-term effects of caregiving. This should also be a concern within each community.
Imagine a day in the life of a parent raising and supporting an individual with a physical and/or intellectual disability. Parents have become masterminds behind routines, developing patience around transitions, tuning into sensory overload, understanding a variety of communication styles, supporting and resolving behaviors, addressing the child’s everyday anxiety and meltdowns, balancing therapies and medical visits, attending to and supporting steps of daily tasks, and most importantly allowing love to overshadow the fear of the future that builds in them daily.
Not to mention the physical barriers and limitations that require lifting, repositioning, battling with transportation accommodations, mobility needs and accessibility while navigating through the everyday world. Vacations, sports, a trip to Walmart, family reunions, summer breaks, going out for a weekday dinner, and life celebrations are not impossible for these families but it takes a substantial amount of planning, a back-up plan for the back-up plan, and an unimaginable amount of anxiety.
I do not write this for you to pity these caregiving parents, because that is far from what they need or want. I share this because everything mentioned above takes a toll on mental and physical health over time. Most of these parents care for their child into and through adulthood when the physical and mental tolls begin to escalate. Caregiving doesn’t stop at 18 years of age. There is no empty nest celebration which brings me to my point that the parent’s health is more crucial than one might think.
As a society we first think about the resources a family might need in order to make their child/adult with disabilities successful. We focus so much on the person with the disability, are we leaving out the parents? Simple answer, yes.
As the focus of our society and government has been to deinstitutionalizing individuals with disabilities, which is a great and positive effort, there has not been enough focus on the parents and their long-term health in now becoming long-term caregivers. Health care supports for physical and mental health are not discussed, supported enough or advocated for in terms of future needs. Most parents don’t have time to think of themselves because they spend their time caring for, advocating for, or at the end of the day it’s not accessible to them due to lack of accommodations for their child. These parents have a higher probability of making unhealthy choices, due to convenience and the intensity of their lifestyle. The most alarming needs that come to mind; social isolation, increases in tobacco and alcohol use, access to adequate health care, the Medicaid Waiver crisis (the need is greater than the national/state budgets), respite supports, flexible employers, healthy diets, and an increase in anxiety and depression.
What can we do to be better? Community trainings for those individuals (friends, neighbors, mentors) who want to provide respite, church education/training, therapy waiting room education/health screenings, meditation rooms for parents within therapy services, community volunteer parent support (meal trains, daily household tasks/errands, emergency caregiving, etc.), specialized counseling within the home to accommodate schedules, and most importantly awareness.
The resolution to address these concerns can’t be made overnight, and in most cases would have to be individualized to each family. The purpose of this blog was to take the first step in offering awareness to those reading, that in fact the most important part of a child’s life who has a disability is their parents/caretakers. The parents/caretakers’ health is crucial and is the heart of the home, and we need to find a way to ensure they are a priority. Not only do the parents deserve more access to care and support, but also the individuals with disabilities in our community who depend upon their caregivers.
Parents: We understand your child/adult with disabilities depends on you. Your health and taking care of yourself should be a priority. Trust me I completely understand to some it is impossible, but with new technology and Tel-A-Health, it is more possible. Don’t hesitate to say what you need. Help offer solutions, because we know the issues are lack of resources. You are important and your health is critical for more than one reason!
Teachers: Be aware that sometimes the only time a parent might have to self-meditate, breathe, and focus on themselves is actually when their child is in school. This time is not only vital to them it is a way of life for them. I remember as a teacher I tried to do whatever I could to offer as much support as I could to try to elevate the stress within the home. Sometimes would it have been easier to throw in the towel and call the parents to come get their child?…..yes. But, for me the purpose of this article stood out to me. It was my way to help them.
Community: Be aware! Start the conversations of how we are supporting those parents to impact their health. I offered many suggestions above to start the thought process…..now who is willing to take action? It can’t be the parents raising those with disabilities, it must be us!