New legislation promises more help for low-income families
By Michelle Lawrence
“It’s an awesome feeling to change policy so that equality is from the get-go and from the gate for all kids. This new law/policy will help children on fee for service Medical Assistance and Managed Care who are mostly low-income and disproportionately minorities. This is victory at its best!” says Idil Abdul, autism advocate (see “Mother of autistic child fights for equal care,” MSR, May 2).
On May 16, the Minnesota State Legislature passed an autism therapy (ABA and Developmental Therapy) coverage law, which was subsequently signed into law by Governor Dayton. Unfortunately, many families struggling to cope with the illness are not confident the new law will address their needs.
“We now have equal access to autism therapies, and now all low-income families will be able to receive it through Medical Assistance programs,” Abdul says with glee. Soon afterwards, though, her tone changes and becomes more solemn and serious. “We have a victory with ABA, but we still have a long way to go,” she adds.
In a conference room at the Brian Coyle Center in Minneapolis, Abdul introduces me to a couple of Somali fathers who have children affected by autism. The fathers want to tell their stories of struggle, stress and frustration — things that they experienced while learning to navigate their way through barriers that they felt stood between them and the help they were seeking to secure for their kids.
When Abdirisak Jama came to the United States in 1994 from his native country of Somalia, he had no idea what life in America would hold. Like most immigrants, his hope was of a better life, which he began to build piece by piece, first by getting married and then by becoming a father.
After welcoming three children into the world, Jama had grown accustomed to the routine of daily life in America, where the nuclear family bands together to support itself, and where children are routinely seen by pediatricians and enrolled in early childhood programs. Though Jama, 36, of Minneapolis, had gained some experience with child rearing, he was not prepared for the onslaught of worry and fear that was ahead for him and his family when they learned that one of their children was presenting symptoms of autism by age two.
“After we took my son to get his MMR [measles, mumps, and rubella] shots, we noticed that he began to spike a fever, so we took him back to the clinic,” Jama said. “We were told that it is fairly normal for kids to get fevers after the shots, so we didn’t feel too worried. But then, after three days, when he still had fever, we grew very concerned.
“About three months after his MMR shots, we began to notice that he was sick a lot and had trouble with acid reflux. Then, he wasn’t sleeping well and would stay awake through the night,” he said.
Jama enrolled his two-year-old son in an early childhood preschool program where teachers approached him with concerns about his son’s development. “They told me that my son needed to be evaluated for autism. They told me that he needed to
be evaluated by a doctor.
“I didn’t know what autism was. I had never heard of the term before. I didn’t know what to expect and how autism was going to impact the life of my family,” he said.
By the time his son received a medical evaluation for autism, he was expressing multiple behavioral problems, according to Jama. “He would not sleep, he was severely hyperactive, and he was very hard to manage, much harder than managing a typical two-year old.
“My son is now 10 years old and attending a school in North Minneapolis, where there are under-funded programs and limited resources to help autistic children,” Jama said. “I was able to get an early diagnosis, but what good is that if we can’t get proper treatment? My son still does not talk, and I have experienced a stroke as a result of the stress of caring for his needs.
“When we tried to get help from a personal care agency, we were sent a youth who wasn’t trained to manage the needs of an autistic person, and that just added to our stress as a family. We need more in-home support, and my son needs treatment, not just to be babysat at school.”
Just as Jama stood up to end our conversation, a second father came forward to tell his story. “My son Addullahi was diagnosed with autism at age three, and he is now 13-years old,” said the second father, who asked to remain anonymous. “Abdullahi began having seizures after getting vaccinated, and that was one of the first signs that something was very wrong,” said the father.
“My son recently spent 42 days in the hospital so that doctors could figure out how to feed him. They tried a feeding tube, but that didn’t work. Nothing has worked. It’s all a mystery. I have a personal care assistant to help manage the daily needs of my son, but you will see in the pictures that I’m giving to you that more help is needed. Please know that more help for families and children affected by autism is needed,” the father insisted.
Autism is a neurobiological disorder that affects four times as many boys as girls. It is known as a “spectrum disorder” because no one person will be affected quite the same. Most scientists agree that childhood vaccines containing thimerosal (a mercury-like preservative) do not cause autism, believing the cause to be a combination of environmental and genetic factors.
However, on July 7, 1999 the American Academy of Pediatrics and the U.S. Public Health Service issued a joint statement calling for removal of thimerosal from vaccines. Researchers with the National Centre for Autism-UK report that 20-30 percent of children receive their diagnoses of autism between the ages of 18 and 24 months, after a period of apparently normal development has occurred.
Families remain confused about the cause of this devastating illness striking their children, and many, including the Somali fathers we spoke with, continue to associate the onset of autism with their children’s vaccinations. One of the fathers provided the photos accompanying this story to show the withdrawal of his normal, alert son after receiving vaccinations.
Research shows that autism takes a severe toll on the entire family because its associated disabilities present overwhelming challenges for families. Researchers from the Nisonger Center for Mental Retardation at Ohio State University found that caregivers of children with autism experience higher rates of anxiety and depression than do parents of typically developing children or parents of children with Down syndrome or cerebral palsy.
The disabilities symptomatic of autism include behavior problems such as refusal to toilet train, consumption of inedible items, unpredictable aggression, inability to sit in a car seat during a car ride, smearing of feces, and resistance to haircuts and daily dental care. Other associated disabilities common to autism are food allergies and metabolic and digestive disorders.
Research notwithstanding, it is clear that families affected by autism need more community support to cope with its effects. Whether medical science and Minnesota’s new law will soon offer these families substantial relief remains to be seen.
Michelle Lawrence, MA, MPH, specializes in cooking African-based dishes and relationship-enhancing dining experiences for families and couples. She can be reached at 612-251-9516.