Why Should Delaware Care?
Sarah Neyers is searching for help for her son, 9-year-old Gavin, who needs speech, motor, and cognitive therapies. But she was recently rejected from a Medicaid fund that pays for those therapies for kids with severe disabilities. The rejection highlights how some kids with autism, and who are cognitively high-functioning, struggle to find help they need.
Nine-year-old Gavin Neyers struggles to write using just one hand. He cannot open anything with a twist cap. He cannot open a bag of chips.
His mother, Sarah Neyers, says those difficulties prevent Gavin from participating in classroom activities, leaving him feeling isolated.
“People look at him funny,” Neyers said. “He can’t make partners in class.”
Still, state officials say Gavin, who has been diagnosed with autism, is not eligible to receive Medicaid benefits to pay for therapy that could help him improve his speech, motor, and cognitive skills. Neyers’ private insurance also has declined to pay for certain therapies, she said.
While Gavin qualifies for Medicaid financially, Neyers said the state told her he does not meet the medical criteria needed for the Children’s Community Alternative Disability Program, which provides Medicaid coverage to kids with severe disabilities.
Among the criteria is a requirement that a child needs a nursing-facility level of care or acute hospitalization, according to the Delaware Health and Social Services website.
Neyers said the state’s denial has left her feeling frozen and unsure of how she will afford help for her son without financial support.
Last month, she appealed the state’s decision. A hearing officer from DHSS has 90 days from the date of the September hearing to rule on the case.
A DHSS spokesperson declined to comment on details of Gavin’s case.
But, Dr. Sherry Nykiel, the agency’s behavior health director of the Division of Medicaid and Medical Assistance said doctors too often misunderstand certain programs and will inaccurately tell patients that they qualify for care.
Nykiel said the department is working with doctors and other medical professionals to ensure they understand the federal regulations for the Children’s Community Alternative Disability Program.
For Neyers, who is simply focused on her son, the situation has sent her into a spiral of stress as she seeks help from the state, from Gavin’s school, from her insurance, and from the nonprofit Autism Delaware, which she called her “lifeline.”
While teachers have called Gavin a “model student” who never disrupts class, Neyers said he struggles to do things independently.
Her son has tools to help him write but won’t get them without being prompted by an instructor, she said. He is also a rigid rule follower who will not get up to use the bathroom without a teacher’s permission.
Neyers believes Gavin can ultimately grow up to become a successful adult, if he receives the necessary therapies.
“Just because he is a higher-functioning child, I do not believe that he should be treated like his therapies mean less,” she said.
Identifying Gavin’s needs
Neyers first noticed her son’s speech impediment when he was in kindergarten. When she asked for a school evaluation, district officials said he was making normal sounds for a child his age, she said.
By first grade, Neyers said Gavin’s teacher noticed his occupational needs when she saw him writing with two hands.
The teacher recommended Gavin for an occupational evaluation, but his school district determined he did not qualify for therapy because it was not impacting him academically, Neyers said.
By the time Gavin was in third grade last year, Neyers was able to get her son an individualized education plan to help his speech. And his subsequent paperwork indicated he needed speech, cognitive, behavioral, and occupational therapy, Neyers said.
But when he received his education plan, the Red Clay Consolidated School District officials also determined they would not provide Gavin with occupational therapy. Instead, they said in a separate document that he would receive an “occupational therapy consult” for 20 minutes every two-and-a-half months.
Red Clay Consolidated School District spokesperson Alva Mobley said in a statement to Spotlight Delaware that the district is “not permitted to discuss or confirm” any details related to individual students and their educational records or the services they may receive.
Mobley’s statement did confirm that occupational therapy is generally provided based on a student’s needs, which are determined through the district’s “special education evaluation process.”
“Depending on the goals outlined in a student’s plan, these supports can include direct services, consultation, or classroom-based strategies,” Mobley said.
Still waiting for a response
In June, Neyers submitted to state health officials a Medicaid application for Gavin’s therapy that included 41 pages of paperwork outlining her son’s struggles. She then waited over a month for a response, she said.
When Gavin was ultimately rejected, state officials said the family could appeal the decision, Neyers recounted. Also, despite the rejection, Neyers said Gavin did receive a Medicaid benefits card in the mail.
She later learned that the card had been sent out in error, she said.
On Sept. 16, Neyers testified at a hearing as part of her appeal of Gavin’s rejection.
“You may have heard negativity throughout my testimony, but what you don’t see is a young child who will develop into a phenomenal adult with the services requested,” Neyers said during her testimony.
On Oct. 7, Neyers said she received a certificate of Delaware Medicaid Health Plan Coverage from DHSS.
But the certificate only added to her confusion. While the date at the top of the certification stated Oct. 1, the document itself said the coverage started on May 1 and ended on July 31.
