When searching for answers, when in need of guidance and help, Bob Hage and Odette Adrian were constantly confronted with locked doors. As the parents of Annika and Maya, twin daughters with intellectual and developmental disabilities (I/DD), they struggled mightily to find a dentist who could provide pediatric oral care for children with special needs. Bob and Odette tried for months to find a solution but were met with ‘no’ wherever they turned. Fortunately, they found their way to The Arc of New Jersey, and specifically, our Mainstreaming Medical Care Program. After explaining the obstacles and roadblocks that seemed to impede all of their efforts, The Arc of New Jersey was able to connect the Adrian-Hage Family and their daughters to an oral care specialist who could provide the unique and specific treatment they needed. Frustration, confusion and disappointment over a span of months was resolved when The Arc of New Jersey intervened and provided the needed roadmap.
And that’s not where the story ends, The Arc of New Jersey continues to help the Adrian-Hage Family and thousands of other families who contact our organization each year. Some are looking for resources, others are lost about the system, its complex web of services and how to access what they need, others need direction for how best to support their loved one with intellectual and developmental disabilities and they don’t know where to start. The Arc of New Jersey assisted the Adrian-Hage Family again at the start of the year when Annika saw a significant reduction in the service hours she receives from her Medicaid HMO for the Personal Preference Program (PPP). Annika is non-verbal, medically fragile and because she is unable to chew food, she requires a completely pureed diet. PPP is a critical component of support for the Adrian-Hage Family. It allows Bob and Odette to hire workers, including special education teachers in training, to assist Annika. During this time, her parents know she is both engaged and learning, but also cared for and in good-hands. This means Annika receives the assistance she needs while mom and dad get a respite to take care of other responsibilities related to employment and the home. Hearing that Annika’s hours for this critical program were significantly reduced despite the fact that her level of need remains the same, The Arc of New Jersey was able to connect with representatives from the State’s Medicaid Office to help resolve the problem. Within a couple of days, Bob and Odette were put in touch with the right people and soon the decision to reduce Annika’s PPP hours was reversed.
The Arc of New Jersey has supported hundreds and hundreds of families during this unusual and challenging period of time as they navigate the COVID-19 health crisis. Although the pandemic has been incredibly difficult for everyone, families supporting loved ones with I/DD have been hit particularly hard as the safety net programs and services outside the home that they’ve come to rely on have either transformed into virtual supports or disappeared entirely. This includes our ongoing assistance with the Adrian-Hage Family. The Arc of New Jersey is currently working to help Annika gain understanding of a new speech app that will allow her to grow her vocabulary and which will facilitate more seamless communication with her family, teachers and friends. Her current app does not allow her to add new words so when she meets new people, has new experiences or goes to new places, she cannot talk about it because those new words cannot be added. As we do for other families, staff at The Arc of New Jersey helped Bob and Odette review Annika’s Individualized Education Plan (IEP) and worked through why learning the new speech app was necessary in order for her to meet her educational goals. Staff also discussed with the family what specifically needed to be requested of the school and how to go about making that request. As the Adrian-Hage Family continues to advocate for this needed assistance, The Arc of New Jersey will be there every step of the way. Our organization will be there for Annika and the thousands of individuals with intellectual and developmental disabilities living across the state, to receive the services they need to reach their full potential and lead integrated lives.