Testimonial
-L.png "Alex Guedes, at home, with his grandmother.")
Alex Guedes is 25 years old and has Down syndrome.
Like many people living with complex disabilities—and the families who support them—Alex’s quality of life has been shaped not only by his medical needs, but by the policies that determine what kinds of support are available to him.
When Alex turned 21, he aged out of Medicaid’s pediatric protections. Under the federal EPSDT mandate, children are entitled to all medically necessary services, including skilled nursing care. But once those protections end, many families encounter a sudden gap between what their loved one needs, medically, and what the adult system is structured to provide.
Alex once spent 297 days living at the Children’s Hospital of Philadelphia—not because hospitalization was medically necessary, but because there was no clear path for him to return home through New Jersey’s adult disability services system.
“All paths led to a facility, a group home, or a developmental center,” Alex’s mother says.
The Medicaid adult system lacks the flexibility to support someone with both medical and developmental needs at home. Alex’s needs are not unusual among individuals with significant disabilities. What is unusual, however, is his outcome.
The turning point came through Self-Direction, a model that allows families to design and manage individualized supports rather than relying solely on predetermined service options.
Through Self-Direction, Alex’s family was able to build the supports needed to bring him home. Today, Alex receives 16 hours of nursing care each day, along with additional services funded through his DDD budget. That support also made it possible to install medical equipment in the home, including a specialized bed and stair lift.
Because of these supports, Alex now lives at home with his family, in a community of people who know and love him best.
“But too many families never reach this point. When flexibility is restricted, families are pushed toward congregate care that is more costly, more restrictive, and often more traumatic,” Alex’s mother says.
Alex’s family hopes their story will offer a reminder that the decisions made in government offices do not stay on paper. They ripple outward into the daily lives of real families—shaping where people live, how they receive care, and whether individuals with disabilities are supported at home or pushed toward institutions.