A Philadelphia mother accused of leaving her severely-disabled 21-year-old son in the woods for several days is facing criminal charges. The young man is at a Philadelphia hospital, and is in stable condition.
The mother has been called a "monster" in newspaper headlines, and one might expect a loud outcry from the disability community, but advocates are not using words like outrage when asked about this incident. Instead, their take seems to be colored by a quiet sense of sadness.
"I so feel for these families," said social worker Ellen Becker who works at HMS school in Philadelphia, which serves children with cerebral palsy. She said she is not making excuses for this mother, but explained that outside of school, which ends at the age of 21, families don't get breaks from being caregivers. "There's no such thing as running out to the corner store. Our families are really expected to do what I think is unsustainable." Becker said she hoped the incident would bring about more conversations about the needs of families who care for disabled children.
Disability advocates say services and funding have been reduced in recent years, leaving major gaps. "One of the biggest services that families used to avail themselves of is respite, which is basically a temporary break from caregiving, but that's become less and less a service that the system offers," explained Celia Feinstein, who heads Temple's Institute on Disabilities.
Dee Coccia has been an advocate since her daughter was born with severe disabilities fifty years ago. She heads an organization called Vision for Equality and says that even though she always had a supportive family, the relentless demands at times pushed her to her limits. "It can become very stressful, it can become all-consuming, and it can sometimes stress you out and make you feel like you don't know how much more you can take."
Coccia says about 14,000 Pennsylvanians with disabilities are on waiting lists to receive services — and the majority of them are being cared for by their families as they wait for assistance.
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