04/27/2026
For 297 days, Alex lived in a hospital room. Not because he needed hospital care—but because New Jersey’s home care system didn’t have the capacity to support him at home.
That’s the system we’re fighting to change. We demand better reimbursement rates and a system that actually allows people to live at home and in their communities, where they belong.
📢 May 19 rally info: homecarenj.org/rally
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Alex Guedes is 25 years old and has Down syndrome.
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.
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.
“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 into the daily lives of real families—shaping whether people are supported at home or pushed toward a facility, a group home, or a developmental center.
