A Somali immigrant mother’s relentless campaign to expand care for poor children with autism has achieved a major triumph, as Minnesota becomes one of the first states in the nation to subsidize a broad range of intensive therapies for the developmental disorder.
The federal government has approved Minnesota’s request to pay for expensive one-on-one therapies designed to improve language and social skills in children and young adults with autism. As a result, hundreds of low-income families on Medical Assistance, Minnesota’s health plan for 1 million poor and disabled Minnesotans, will benefit from treatment that previously been available only to wealthier people.
The approval by the federal Centers for Medicare and Medicaid Services (CMS) marks a major victory for Idil Abdull, whose 12-year-old son has autism and who fought a relentless, five-year battle to gain coverage of intensive early interventions for young children with the disorder. Abdull made so many trips to the State Capitol in her distinctive red and blue hijabs that she became known as the “Autism Lady” and was on a first-name basis with state commissioners and influential legislators.
“I wore them down,” an ebullient Abdull said in an interview after the CMS announced approval last week. “This wasn’t a case of ‘Minnesota Nice.’ I let my emotions for my son and for the thousands of other poor kids with autism drive what I was doing.”
One of the more controversial therapies that will now be covered by public insurance is applied behavior analysis, which emphasizes simple tasks and repetition as a way to control impulsive behavior common among autistic children. The therapy, which costs up to $100,000 a year, has been offered to some middle-class and wealthy families who petitioned for state coverage, but not to many poor children on Medical Assistance whose families lacked the legal tools to pursue coverage. Minnesota is now just the third state to cover applied behavior analysis in its public insurance program, according to the CMS.
Under the plan approved by the federal government, children who are covered by Medical Assistance with autism spectrum disorder or a related condition may be eligible for the new benefit, depending on a detailed examination of the severity of the child’s disorder.
Takes effect July 1
Based on this evaluation, Medical Assistance will cover a range of developmental and behavioral treatments, as well as specialized training for family caregivers.
The Minnesota Department of Human Services, which oversees Medical Assistance, estimates that 325 children on the program will benefit from the therapies during the first year after the expanded coverage goes into effect on July 1; that number is expected to grow to about 1,000 per year.
The early-intervention treatments will cost Medical Assistance — funded by state and federal money, — about $15 million in the first year.
“This is a game-changer for a lot of children and their families,” said Human Services Commissioner Lucinda Jesson. “It’s based on the idea that, if we can get [children] diagnosed earlier and get them services earlier … then we can change the trajectory for a lot of these children’s lives.”
The breakthrough culminates years of tireless advocacy by Abdull, who led a one-person campaign to raise awareness about the prevalence of autism among Somali-Americans and disparities in treatment. A native of Somalia who grew up in Boston, Abdull has made more than 50 trips to the State Capitol since 2010, meeting with legislators and speaking before health and human services committees.
Her strategy was straightforward. Whenever Abdull heard that Department of Human Services officials were scheduled to testify before a committee, she would show up at the hearing and demand a chance to speak. She usually began with the same line: “Hello, my name is Idil Abdull. I have a son with autism, and I would like to know if the state of Minnesota covers autism therapy such as applied behavior analysis?”
Admitted denying services
Abdull’s relentless questioning forced state officials, time and again, to explain that the state did not cover the therapy for poor children, while covering it for others. The reality was that some more affluent families were able to access the therapy through Medical Assistance by applying for the benefit under a special disability category that had no limit on family income.
“They had to admit they were denying services to the people who needed it most,” Abdull said. “To which I asked, ‘Isn’t Medicaid supposed to be for the poor?’ ”
To avoid becoming disheartened, Abdull blanketed much of her home and car with tiny notes of inspiration. On her steering wheel is a sticker that says: “A journey of a thousand steps starts with a single one.”
“I just drank a lot of hot Somali tea and never gave up,” she said.
Abdull’s campaign received particular support from Twin Cities Somali-American parents, whose children suffer from the disorder at a much higher rate than do other children.
Eager for benefits
Marian Ahmed, who has two young sons with autism, hopes to be among the first to access the new benefits.
Over the past five years, she has worked two jobs and borrowed more than $35,000 on her credit card to pay for one-on-one therapy for her son at home by a caregiver, because Medical Assistance would not cover the treatment. She says the therapy has meant that her 7-year-old son, Ayub, who was diagnosed with severe autism, now speaks in full sentences and can sit still through his school classes.
“Today, I can’t even recognize my own son, his progress has been so dramatic,” Ahmed said. “I just wish that every parent had the same opportunity.”