Drew Rego of Tewksbury was born with a genetic disorder and epilepsy. His disability presents itself in a complex way. Just six years old, Drew lives with his parents, Jason and Erin, as well as his brother Dominic. Drew’s care needs are 24/7, but despite all the challenges, he’s always smiling! Drew loves music, animals, and being outside in the warm fresh air.
Jason works full-time outside of the home, to provide for his family. Erin, on the other hand, must work part-time, so she’s better able to care for Drew. Erin states, “We’ve experienced challenges in many areas. [Drew’s] complex needs cause all sorts of scheduling issues.”
Drew’s full medical needs are still unravelling, with multiple new diagnoses surfacing in a relatively short timeframe. This creates complications in planning for treatment strategies and medications. Drew receives specialized transportation to and from school each day. He usually comes off the bus exhausted and it takes time for him to recover from the long ride home.
Erin adds, “With all the time we spend caring for Drew’s needs, we have to be sure we also focus on [his brother] Dominic as well. Finding adequate home and respite care has been a constant struggle. There just doesn’t seem to be enough nurses and caregivers out there.”
To learn more about The Arc’s commitment to solving the DSP workforce shortage crisis, visit arcmass.org/workforce.