This letter was originally published in the Syracuse Post-Standard. It has been adapted with permission from letter-writer Barbara Davis, a member of The Arc’s National Sibling Council.
I am the sister and legal guardian of a sibling with an intellectual or developmental disability (IDD). She resides in Onondaga County in New York and receives services from The Arc of Onondaga. I live in Virginia and have been her long-distance advocate and guardian for the past 20 years, since our parents passed away. I would like to share with you the support and care my family has been fortunate to receive from The Arc throughout my sister’s lifetime.
Our family pediatrician referred my parents to The Arc shortly after my sister was born in 1954, and I can’t imagine what her life (or ours) would have been like without the essential services The Arc provides.
From childhood well into adulthood, she attended The Arc’s Day Habilitation program, where she learned daily living and social skills, made friends, and enjoyed group activities. She bonded not only with other participants but also with dedicated staff, who encouraged her and supported her with respect and patience. To this day, a retired day habilitation staff member remains in touch and meets up with my sister and me when I am in town.
My sister lived at home with my parents until my father passed away and my mother was diagnosed with cancer. The Arc then assisted us in finding a residential placement. Before she died, my mother found great peace of mind knowing my sister would be living in a safe and supportive environment.
For the past 20 years, my sister has lived in a group home where she receives total care from direct support professionals. They provide meals, assist with such basic daily tasks as bathing and dressing, and provide transportation to doctor’s appointments. She also receives occupational therapy and physical therapy from The Arc. And the staff supports me by keeping me informed, helping me connect with my sister several times a week on FaceTime, and facilitating my in-person visits.
I cannot say enough about the dedication and hard work of the direct support professionals who have made such a difference in my sister’s life. At no time was this more apparent than during the COVID pandemic. When residents at my sister’s group home all came down with COVID, staff continued to show up every day to support and nurture the residents. Due to their wonderful care, all the residents recovered.
Without services and support from The Arc, my sister would have had a far more isolated life and fewer opportunities to develop her full potential. Instead, she is happy and sociable and “living her best life.” She loves her home and family at The Arc.
How To Help
Currently, chapters of The Arc and other nonprofit organizations that support people with IDD nationwide are experiencing a funding crisis. The amount that Medicaid reimburses these groups to pay dedicated direct support professionals is too low and not a livable wage. We need members of Congress, state legislatures, and governors to invest more resources in the essential services provided by The Arc and other nonprofits that support people with IDD and their families.