Susan Campbell: State’s Woes Shouldn’t Be Zoe Benjamin’s, A Young Woman With Disabilities
By Susan Campbell, Contact Reporter
Numbers can't begin to tell the story of Zoe Benjamin, but here goes:
330 — Last month, Zoe, 21, of New Britain was among 330 Connecticut adults with intellectual disabilities who graduated from school. In addition to her intellectual challenges, she has autism, cerebral palsy and a seizure disorder, though a careful combination of diet and medication has kept the latter at bay for nearly seven years.
6 — On a scale used by the state Department of Developmental Services to determine a client's level of need, Zoe ranks a 6. The scale goes to 8, the clients with the highest needs.
2,570 — Zoe is among some 2,570 state residents who rank a 6. She cannot be left alone. She has no sense of danger, and she has a high pain threshold. She is not verbal — that is, she makes noises, but she does not speak. She cannot play board games. She can't sit still to have her mother read to her. She is not toilet trained, though her family is hopeful. She takes maybe 15 pills a day.
130 — Adult diapers cost roughly $130 a month, though Zoe's family recently decided to have a prescription written for them, which will give them a small financial break.
22,000 — According to Shannon Jacovino, The Arc of Connecticut's director of advocacy and public policy, the average cost of services for people like Zoe is about $22,000 a year. That's average. Zoe's support system costs closer to $40,000, according to her mother, Adrienne.
Very few — That, frankly, is the number of options her family faces. The state doesn't have a budget, and there is no money for programs for new graduates for the next two years. Connecticut's Gov. Dannel P. Malloy has signed an executive order so that he can run the state without a budget, and the rubric he's using is draconian.
This isn't just politics and numbers. It's people, like Zoe. If this were a regular world in a normal time, upon her graduation, she would enter a program with one-on-one caregiving that would help her be as independent as possible. But this is not a regular time. That means a severe reduction in the structure in which she thrives, and an almost assured regression for Zoe. Perhaps there will be acting out. Her mother has a post-tantrum photo that shows a sturdy coffee table in pieces. It's what happens when you balance a state budget on the backs of the state's most vulnerable residents.
Zoe's father, Steven Horowitz, is a Central Connecticut State University associate professor in psychology. Her mother, Adrienne Benjamin, is a clinical social worker. They've been able to adjust their schedules, and include a host of dedicated people, including their 27-year-old son, who works full-time in the New Haven area in the field of acquired brain injury, to provide care. The family is better off financially than some, but there could come a time when someone needs to stay home. In some families, that means going on SNAP, or other entitlement programs, to keep the family afloat.
Adrienne Benjamin is chair of the Governor's Council on Developmental Services and, in February, she testified before the state appropriations committee. She's even taken her daughter along, but she knows how lobbying works. A legislator will hear from her family about the need for services, and then a half-hour later, someone else comes to talk about criminal justice reform, or opioid abuse. And then there are the professional lobbyists who work for the banking industry, or the pharmaceutical companies. Still: "We shouldn't have to fight one another for crumbs," said Adrienne Benjamin.
Especially critical to Zoe is the potential defunding of a crucial program, Community First Choice, a Medicaid program that was offered through the Affordable Care Act and allowed families to hire caregivers. The Horowitz/Benjamin household has been hiring someone for 15 hours a week. Now that school is over, they'll need someone for more like 23 hours a week, which they will have to pay for themselves.
So, one last number:
Countless — The number of nights the family has spent discussing what to do if the DDS day programs ever went away. This is their worst case scenario, but Adrienne Benjamin is quick to deflect pity. They are better off than most, she says. But what do you do with a young woman and her 329 cohorts who are so challenged, and have just been given a hill to climb? And what do you do with the 350 others who graduate next June?
Susan Campbell teaches at the University of New Haven. She is the author of "Dating Jesus: Fundamentalism, Feminism and the American Girl" and "Tempest-Tossed: The Spirit of Isabella Beecher Hooker." Her email address is firstname.lastname@example.org.