After more than eight harrowing months as a patient at the Children’s Hospital of Philadelphia, 22-year-old Alex Guedes is scheduled to return home to Atlantic County in September. The house has ramps, lifts and other accommodations for Alex, who has Down syndrome, depends on a wheelchair and has complex medical issues that leave him unable to do almost anything for himself. His family will get extra state funding to pay for nursing help, but his mom Susan Coll-Guedes still expects much of Alex’s daily care will fall on her and other family members.
While each case is unique, thousands of New Jersey families, like Alex’s, are stuck in a kind of limbo as they try to get adequate services for loved ones who have disabilities and have complex medical challenges. Some are waiting for a safe group-home option when such housing capacity is already stretched thin. Others need help providing care at home, something that can be hard to find given a growing national nursing shortage. And many are frustrated by government regulations and budget limitations that they say restrict their options for accessing care.
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