Videotapes of men having non-consensual sexual relations with disabled women in residential care have recently surfaced and are being investigated. Sexual assault is a crime and a tragedy. And one of our greatest fears.
My 19-year-old daughter has frequently been described as beautiful. Like most parents, we can't help but beam when we hear the compliments, words that Stacy cannot understand. Her brain, damaged by undiscovered oxygen deprivation during my pregnancy, has left her unable to communicate with anything other than a warm smile.
Stacy has been happy in our home all her life. Though devastated that her developmental delay was irreversible, we endeavored to make the experiences she could safely have rewarding and joyful. As an adult, Stacy needs us to care for her feeding and toileting -- but has found happiness on her own playing with favorite toys, or sharing songs and hugs with Mom and Dad.
As we her parents transition beyond the capabilities and strengths of middle age, Stacy will unfortunately be facing transitions, too. When we can no longer lift her 90 pounds, no longer bathe her or change her, we, like most parents whose children do not achieve independence will need to explore care solutions, either in our own home, or, eventually, in a group home or other residential care facility.
And we are terrified. Adults with developmental delay are over twice as likely to be victims of sexual assault. Stacy cannot walk or talk, cannot say "No!", and cannot run away from danger. Without loving parents or dedicated caregivers, she is totally vulnerable to manipulation and abuse and unable at all to defend herself. Caring for her at home has taxed us physically, yet we fight fatigue, neck pain and back pain daily, rather than risk releasing her to an environment that could be much less safe.
Our country's economic crises have torn away many of the safety nets for our vulnerable populations with mental and physical health problems. More cuts are not off the table, leading to fewer options for care of adults with special needs as well as resources and staffing for such care. While most employees of such institutions are caring, ethical, and kind, reduced funding often means reduced staffing, reduced salaries, and reduced monitoring that can provide safety checks to avoid dangers from the rare, but not nonexistent, "bad apples."
The monthly fees for many care facilities can exceed the mortgage payments for million-dollar-plus homes, well beyond the reach of most families. And a luxury setting for care, whether for the elderly or for those with special needs, does not guarantee that assault and abuse will not occur. Only regulation, inspection, education and vigilance -- by family members and government regulatory agencies -- will make significant inroads in reducing risks.
For now, we try not to think about the future. My husband and I can no longer care for Stacy each alone, so we lift her together and dedicate our time to meeting her needs. For our big little girl, the sacrifice is worth it. Because the alternatives are frightening.