UNC News Services
The size of the financial burden on families with disabled children largely depends on which state they live in, according to a new study conducted by the schools of social work at UNC Chapel Hill and Washington University in St. Louis, Mo.
According to researchers, parents in states with higher average incomes face smaller burdens — meaning in contrast, more vulnerable families in poorer states often pay more of their own money to cover their disabled children’s health-care costs.
The study found families in Georgia fared the worst, paying an annual average of $972 out-of-pocket to care for their disabled children. That’s nearly $200 more, on average, than families spend nationwide on children with special health-care needs.
In North Carolina, out-of-pocket costs also exceeded the national average, with families spending $856 annually.
“These are disturbing findings that highlight the high costs families face in raising their children with disabilities and health conditions, and it shows that the state in which a family lives really does matter,†said Susan Parish, an assistant professor at the UNC School of Social Work. Parish co-authored the study with Paul Shattuck, the report’s lead investigator and an assistant professor of social work at Washington University in St. Louis, Mo.
The study, which was funded by the National Institute of Child Health and Human Development, appears in the July issue of the American Academy of Pediatrics journal.
Parish said the costs of caring for children with special health-care needs are high, relative to those for typically developing children, because of their greater requirements for both primary and specialty medical care, as well as therapeutic and supportive services such as rehabilitation, assistive devices and mental health, home health and respite care.
The study summary indicates the highest rate paid by parents out of pocket is $972 in Geogia. That’s about $81/month. Not an extreme amount considering the care and services the children with special needs sometimes require and receive.
And if the amount is not affordable there are services and assistance for these families.
I am an advocate for children with special needs and their families and do hope all children receive the care and services they need regardless of the cost.
A small fee to the parents provides a sense of ownership and contribution to the care of their child. A boost to their esteem, rather than a complete handout with no fiscal responsibility. However the fee should not be a burden and based on ability to contribute based on income.
I lived in the US, several states and in Canada. I can tell you I prefer living in the US. My child got in school therapy and ei at a small cost to myself. I would have gotten nothing in Canada. Try 40 to 60k there for therapy of anykind and they often have to travel to the US.
I spend 150.00 a month on meds alone. With special services and medical bills, I spent over $600.00 (out of pocket) this month alone and that’s WITH insurance. We are the family of an adopted child with diagnosed Fetal Alcohol Syndrome