I recently read an article on “How to Help Low-Income Children with Autism.” All of us acknowledge the critical importance of early intervention for a child with special needs. However, this article made the point that, too often, children from low income families do not receive the early intervention services that they so desperately need. Many years ago, the prevailing opinion was that prominent, affluent, Caucasian families were the most likely to have a child with autism.
As a result of methods such as routine screenings and increased awareness, we know today that the prevalence of autism (1 in 59) has little to do with socioeconomic status. However, even with that statistic in mind, less than half of the anticipated number of low-income children receive a formal diagnosis. The implication here is profound: not that low-income children are less likely to have autism; rather, that low-income children are half as likely to be able to receive the diagnosis needed to receive supports.
“It’s so complicated to get an autism diagnosis and treatment in the US,” quotes a pediatrician in Portland, OR. “[With a] process that’s really convoluted and complicated, it’s always the families with the least privilege who don’t make it through.”
Often, we forget that as confusing as this process can be, it is even more challenging for parents who may not speak English nor have any resources to aid them. Consider the many families who live in rural parts of our country; they may need to travel hours to get to the nearest physician or clinician.
Thankfully, community leaders are working hard to bridge this gap, in part by creating a variety of programs designed to meet the particular challenges of their communities.
In Baltimore, a parent-to-parent program has been initiated to work with families of newly diagnosed children, in addition to those who have just begun the process of requesting a screening.
In Southern California, when data showed that minority families visiting regional centers for people with disabilities were receiving fewer services than white families, the state invested $11 million to explore multiple strategies that best reduce the disparity in all of its regional centers.
In the cities of New Haven, Boston, and Philadelphia, more than 80% of families are receiving public insurance. So these cities have paid “navigators,” rather than volunteers, who are culturally matched to families from the point of initial referral to 100 days after diagnosis to ensure that the children receive treatment.
Looking back, Ryan was very fortunate. Uncle Joe was a pediatric neurologist and diagnosed him before he was 2 years old… that was rare 23 years ago. Given my background, I consider myself fortunate to have known, far before the opinion was wide spread, the essential need for Early Intensive Behavioral Intervention, which I believe made a crucial impact in his success. While I am pleased that we have progressed as a community and nation, our work should not end until we see to it that all children with autism receive the treatments/guidance they deserve!
Recently, I read an alarming note about the 2010 US Census: Nearly 1 million children younger than age 5 were not counted. While there is (sadly) a historical precedent of undercounting children of color as well as kids in low-income and immigrant families, this seems a staggeringly high figure, particularly when we consider that federal funding for children means money for programs such as Head Start, free school lunches, free/affordable child/day care, public health insurance and even housing. When these numbers are misrepresented, what we are really saying is that millions of dollars can potentially be lost despite how critical most, if not all, of these services are for young children.
As a worldwide manufacturer of communication devices, we continue our 9-year partnership with TD by field testing some of their devices with our students. This has allowed our children to experience the latest in technology as well as allow us to input in the development of devices and apps. We approached them to determine if there was interest in working with us with our adults. The answer was an overwhelming YES. We have 2 pilot projects in our homes in Pittsburgh and Erie with 3 of our adults. We are also exploring a classroom collaboration; we are so fortunate to be working with Marleah Herman-Umpleby, Clinical Outcomes Manager and Linnea McAfoose, Director of Clinical AAC Content.
As an approved organization, businesses are able to secure tax credits by making donations to either our preschool scholarships or school improvements. In the past 3 years, we have given 160 scholarships to Erie County children whose families meet the income guidelines. Last year, we had an additional $57,000 to use on devices and curriculum that directly benefit our students’ programming.
SEL (Social Emotional Learning) is considered by most education professionals to be the industry’s latest buzzword, as more of us begin to recognize the critical role a child’s emotional state plays in influencing his/her ability to learn and develop. Last year, we spent a great deal of time exploring the idea of trauma; not only by expanding our understanding of what is considered traumatic (for example, living in poverty is a traumatic experience), but also in acknowledging the potentially huge influence that these traumas have in our students’ lives. Sadly, nearly half of our students experience the trauma of living in poverty. In response to this need, our behavior department initiated a “Trauma Informed Care” Professional Development program for all of our school staff, to help us better recognize signs and symptoms of underlying traumas, as well as methodologies we can use to help work through these occurrences.
Since that first year, Ryan has experienced every kind of Christmas imaginable. However, there have always been some constants. When Ryan was just 3, I explained to him that, just as Jesus received 3 gifts from the Magi, he would as well. So over the years he grew up knowing that there would be 3 gifts under the tree Christmas morning. This year his plans are for a golf pass, a ski pass and a water world pass. To be expected from someone who enjoys exercise!
Ryan was 4 months and starting Happy Hearts, the Barber Center child care program located down the street from our main building. Its close proximity provided me the opportunity to visit during lunch and check in on him. And then he celebrated his first birthday with a “party” with his fellow classmates.
Too often we focus on scores and grades as the basis of students’ academic achievement and overall success. I can certainly remember being at Villa Maria grade school and boasting about how many As I had on my report card – something we all did! At that time, none of us stopped to think or discuss the “other side” of learning.
All About Autism 