Max and Gio
Securing The Right Level of Care For Brothers With Fragile X Syndrome
Max (age 12) and Gio (age 10) are brothers who are both diagnosed with Fragile X Syndrome, ADHD, developmental disabilities, and intellectual disability. They require help with nearly all of their activities of daily living (ADLs).
Yet while the boys have the same diagnoses, their symptoms manifest differently. Max and Gio's Pediatrician requested a home health aide to provide ADL assistance for each boy on non-school days while their parents worked. But their Medicaid managed care organization (MCO) gave them a hard time; the MCO denied the doctor's request by claiming it was not medically necessary for the boys to each have an aide. Instead, the MCO said the needs of both boys could be met with one home health aide, shared between the two boys.
The family appealed the MCO's decision, but decided to try using the shared aide during spring break since they had no better option in the meantime. But Max and Gio's parents and their home health agency, which provided the home health aide the boys shared over spring break, quickly learned that not only was it medically necessary for each brother to have his own aide; it was unsafe for them to share an aide. With their children’s well-being on the line, the family contacted PHLP for help with the pending appeal.
PHLP staff reviewed the case and agreed to represent Max and Gio at their internal grievance hearing with MCO. Despite clear evidence that the boys’ health and safety were jeopardized when they shared an aide, the MCO upheld its decision and still refused to approve the doctor's request. Undeterred, PHLP appealed beyond the internal Grievance. We prepared and submitted evidence to be reviewed by an External Review entity outside of the MCO. The External Reviewer agreed with PHLP, finding it was unsafe for the boys to share one aide and that their individualized needs warranted two individual home health aides for one-on-one care. They overturned the MCO’s decision just in time for summer break!
PHLP exists to help families of medically fragile children get the right amount of in-home services to meet the child's health and safety needs. We work closely with families and their health care providers to break down barriers and get Medicaid services approved.
