The other day, I was having a conversation with a young man who had just had his second child. He was sharing how much his life had changed over the years, how his responsibilities had increased and about the many adjustments parenthood required. He then looked at me and asked, “I guess being retired and having an empty nest is kind of an adjustment too. Isn’t it?” My answer to him was “I don’t know.”
My husband and I don’t travel together, don’t take impromptu trips. We don’t stay out late at night. Day care providers for disabled adults are extremely expensive and hard to find. We transport him to activities to see his friends. He loves to be with people. We are in a holding pattern. His siblings both went to college, got jobs, married and now have children of their own. Our disabled son’s life is stagnant. Steven loves people, loves to interact with others, and yet spends most of his time in front of his television in his room.
Steven has been on the Developmental Disability (DD) Virginia waiting list since July 21, 2004. He was 20 years old when we put him on the list. He was in a private school transitioning program in his late teens and early adult life which emphasized preparing him to live on his own and to work in an environment with job supports. That life opportunity has never happened. Both my husband and I had fulfilling careers in public service and have made a comfortable financial life for ourselves and Steven. Unfortunately, the daily living support services that are best for our son are extremely expensive and not financially feasible with the amount of our retirement incomes. We need the financial support from a DD Waiver to give Steven an independent life of his own, living in a group environment with peers.
My husband and I are growing older. We are running out of time to help transition him into a supported living service where he has a chance to have a life of his own. If we can do this while we are still capable of helping him transition, we can offer the supports he will need. We have been told that for Steven to have the financial assistance from a DD waiver, he has to wait until something physically or mentally changes to either one of us, his parents. His life has been filled with “We can’t help him until his situation is critical” news. It’s time for Steven to have a life of his own. He’s been waiting for 16 years. View the Utterback’s video on The Arc’s Facebook page.
Executive Director’s Note: The Arc of HR has provided a partial scholarship for Steven to participate in their SpArc and Simon Edmonson-Center Day Support programs. Scholarships are in jeopardy as the state has failed to accurately estimate the cost of community-based services. Inadequate Medicaid Waiver rates are forcing the closure of many I/DD Service Providers across the state or are causing them to withdraw from services like Community Engagement. Help us continue offering Community based programs by donating today.