17 May Price of Isolation
The prevalence of children with special health care needs has significantly increased in the last decade. According to the U.S. Department of Health and Human Services, 14.6 million children in America under the age of 18 have a special health care need. Families all over the United States are traversing through the challenges and joys of providing for a child with special needs at home. In California alone 1.4 million children, nearly 10% of the national total, have a special health care need. These numbers continue to rise displaying the desperate need for hope and solutions. Studies have shown that having a child with special health care needs can affect a family’s finances, employment status, as well as mental and emotional well-being. Yet opportunities of hope arise out of these challenges, which is why families flock to programs and communities that open doors to resources.
The financial impact on a family is complex and sometimes devastating. Parents are flooded with expenses beyond the normal cost of a child without any special health care needs. Such costs include therapies, home health care, prescription drugs, mental health care, medical equipment, and dental services. Additionally, some children require extensive services throughout their lifetime which are often not covered or inadequately covered by their insurance plans leaving many parents with substantial out-of-pocket expenses often double or triple the costs of a child without special health care needs. Balancing the needs and deciding which costs are a priority leave many families frustrated, confused, and looking for answers.
A recent study conducted addressed the stark contrast of costs for families with and without a child with special needs. In a Time Magazine article regarding the study, JAMA Pediatrics pegged the total lifetime cost of supporting an individual with autism at $1.4 million in the United States. If there is also intellectual disability, the total rises to $2.4 million. That compares with about $300,000 up until age 18 for a typical child. These numbers have a huge financial and social implication that can push some families to file for bankruptcy or poverty.
A study published by the U.S Department of Health and Human Services entitled Work, Welfare, And The Burden of Disability: Caring For Special Needs Of Children In Poor Families researchers found that nearly two-thirds of families with special needs children have incomes at or below the poverty line. The fraction of the families reporting that children went hungry in prior months more than doubled for those with special needs child(ren); reports of adults going hungry also increased. The study also found evidence that families with disabled children had more evictions, utility shutoffs, and homelessness. Though these numbers are alarming there is little help offered to families. For example, insurance companies often offer little financial help or services to families who need it most or if aid is available parents have to go through an arduous process which they do not have time for. Even when the financial challenges seem manageable or of less concern, families face the humble reality that children with special health care needs impact the social sphere in which they build connections and relationships.
Parents often must leave work or limit their hours due when the needs of their family changes. Parents are at risk of decreased work attendance or job loss. Depending on the severity of the child’s physical or mental health needs, a parent’s entire life can, out of necessity, revolve around the care and management of the child’s appointments. In some cases this requires that parents cut back on the number of hours they work or stop working completely to care for their child. According to Children With Special Health Care Needs: Minding the Gaps, published at George Washington University, 32% of parents spend more than 40 hours per week with their special needs child, or time equal to a second full-time job. This further exacerbates the financial situation of families of children with special health care needs and the relationships that once were a daily part of their life can disappear. As the community around them becomes limited, parents are forced into aloneness or can choose to pursue innovation. (Read: 5 Ways to Beat Caregiver Burnout)
Few and far between are programs like E-Sports, where families participate in a community that sees these challenges as opportunities. All over the world parents are looking for hope that will ease the financial burdens and offer peace for the mental and emotional stress. These programs provide a free resource for the whole family. A place where families with children with special needs can go to on Saturday mornings, parents come to see that growth and joy are attainable. Children are able to play soccer, karate, basketball and fitness in an inclusive environment. At E-Sports all children no matter their skills and abilities are cheered on by their peers and coaches. It is a place where children both typical and special needs are able to build friendships while parents are able to meet other parents. Communities and connections develop, flourish even, as challenges become possibilities. Parents are no longer alone, children are no longer isolated, and different means normal.
It is not too hard to see that in our world that the cost of raising children go beyond the financials. A study released by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (MCHB) families with children with special with special health care needs face a greater risk for family dysfunction and adverse parental health and mental health. For instance, it has been estimated that the divorce rate is in the 80% range in families with children who have an autism spectrum disorder. Additionally 22% of mothers of children with disabilities reported having their own health-related limitations, both physically and mentally. Building a family is a responsibility and many times it comes with unknown opposition, but when families search for solutions, it is programs like E-Sports that give them another alternative.
Families are experiencing higher financial, employment, mental, and emotional costs. None of these costs are limited however by the power within a strong community that strives to see and create hope. Programs that offer support and freedom for families to engage in relationships are a necessity in our world. The cost for children and their families should not be more money, loss of friends, or loss of a dream. The price should be one we all pay to ensure that no one is alone through the struggle, that programs and resources will increase and thrive in millions of communities, and needs are met all over the world and that price is that we will not give up.