Jose, a non-verbal, 39-year-old member of the DES Division of Developmental Disabilities (DDD), needs constant supervision. Not one to keep a regular sleep-wake schedule, Jose keeps his family on their toes, even in the earliest hours of the morning. Fortunately for Jose, he's surrounded by his family's love and care–especially from his sister, Maria–and support from DDD.
Jose's mother, Carolina, learned about DDD services through word of mouth in 2008 when Jose was in his 20s. Through DDD, Jose is able to access a day treatment and training program for adults (DTA), as well as attendant care, speech therapy, and respite care–an invaluable service for a family who's "on call" around the clock. Jose doesn't have a set sleep cycle. He sleeps when he's tired and wakes when he's ready to go. This inconsistency makes it especially difficult for his mother.
"I believe the most helpful thing is the Day Program," said Dallas Conner, Jose's DDD Support Coordinator. "His sister attends with him, does all the transport, all while giving mom, who provides the attendant care services, a break each day."
Though she has her own family to care for, Maria makes time every day to help her brother. She accompanies Jose to his DTA where he can socialize with others, sharpen basic skills and have a bit of fun.
National Institute of Health (NIH) studies indicate "engagement in community-based activities and physical exercise are beneficial to individuals with intellectual disabilities." The DTA facility is a welcoming change of environment where Jose feels comfortable sitting on the carpeted floor, playing with plush toys, and enjoying the company of his sister. Play helps contribute to cognitive and motor skills development. According to the NIH, "Participation in enjoyable activities is instrumental to improving individuals' quality of life." Sometimes, Maria and Jose will simply toss a ball back and forth to each other, which helps with his motor skills.
Jose and his sister, Maria, enjoy a quiet moment together.
Like many of us, Jose finds noise annoying. However, he finds music compelling. "If he hears music coming from a car, he will go to the car and get in," said Maria. Car rides can be soothing for him, too. There are times when Jose will tug on Maria's arm, indicating he wants to take a drive.
Other times, when Jose is feeling anxious, Maria will simply cradle and caress his hand, replacing his anxiety with comfort and love. "[Jose] is in need of someone he can rely on," said Dallas. The special bond between brother and sister, he says, "is obvious [and] is a rarity."
Caring for Jose is truly a family affair. Maria has been Jose's primary caregiver for nine years now, although his other family members also support him every way possible.