Supporting Families & Caregivers
“Monica has often been in one of the extremes. As a child with a trach and feeding tube until she was 15 years old, with a rare genetic condition 22q11.2 Deletion syndrome no one knew anything about, she went to her local preschool and took ballet and then earned her brown belt in karate before falling in love with musical theater and performance. We benefited from Pediatric Home Care Nursing programs by nurses who provided extraordinary care in our home, at her Weymouth Public Schools and in our community. We celebrated her successes in our public education system and with a great deal of hard working health are related professionals to assist us, Monica qualified for her high school diploma with her peers in 2012. The real transition is acknowledging when there are no good fits from raising an amazing child with special needs to continuing the care and push for independence for a young adult with an active mind and a complicated, fragile body.
Still, knowing she was unprepared for college, employment or independent living and knowing she was earnestly working towards her goals with her supports when her health began unexpectedly to deteriorate. We made many attempts to utilize excellent programs recently established at special education schools and collaboratives for young adults, presumably like Monica. Eventually, we applied and Monica was approved in December 2015 under the DDS Adult Autism waiver as a result of the Autism Omnibus Act. We have submitted to and endured hours of additional assessments and testing, phone conversations, in-person meetings and emails. We’ve been asked to create visions of job descriptions for services we may or may not get and to identify people to do those jobs that we don’t know if they will ever be hired to do. Really. Monica turned 22 in early 2016 and no one noticed.”
Ian is a courteous, intelligent and humorous young man who recently celebrated his 26th Birthday. Ian has Autism. He received special education services through the Wareham Public School district and graduated with a high school diploma in 2011. A year later, Ian moved from the Wareham community to live with his father, Tim, in Mansfield. Life for Ian for the past several years has been stagnant. Learning that services were available to Ian, Tim has worked tirelessly to identify and secure services that would allow Ian to build a greater life for himself. The Adult Family Care program has been of great assistance allowing Dad to provide support to Ian and balance his own health challenges that has forced him to put his employment as a truck driver on hold.
In the summer of 2016, Ian was found eligible to receive adult services under the DDS Adult Autism Division. It was recommended by DDS that Ian participate in the Supports Intensity Scale (SIS). SIS is designed to not only measure the individual’s support needs, but to also identify their unique preferences, skills, and life goals. In September, Ian and his father participated in this three hour assessment. The results of this intense assessment showed that Ian requires a significant level of support. Despite these findings, he was informed that funding was not available to newly eligible adults with Autism. The response of the DDS Service Coordinator to Dad’s inquiry about other options available to his son was, “just to reiterate there is no funding available at this time. The only thing that could be offered would be a day habilitation program.”
Ian’s dream is to attend a community college and obtain education on computer information systems, find a part-time job, join a local gym and begin a real life in his community.
His vision is not to attend a day habilitation program.