To the Editor:
To New York state legislators and Gov. Kathy Hochul,
I am the sister and legal guardian of a sibling with an intellectual or developmental disability (I/DD). She resides in Onondaga County in New York state 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 Arc provides.
From childhood well into adulthood, she attended 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 with 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. 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 Arc 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 Arc. And, the staff supports me by keeping me informed, by helping me connect with my sister several times a week on FaceTime, and by 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 of the residents recovered.
Without services and support from 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 her Arc family.
Currently, Arc and other nonprofit organizations that support the I/DD population of New York state are experiencing a funding crisis, in particular with regard to recruiting, training and retaining staff. I urge you to invest in the essential services provided by Arc and other nonprofits who support people with I/DD and their families and to establish a Direct Support Wage Enhancement (DSWE) and a 3.2% COLA for I/DD providers in the New York state 2024-25 budget.
Barbara Davis
McLean, Virginia