Carol Saul & Michael Saul
as presented at the Legislative Breakfast, March 11, 2011
Recently a work colleague of my husband visited us from California. He knows our family, sort of, so I showed him pictures from our son Peter’s marriage ceremony. He leafed through them and stopped at one. ‘Who’s this?” he asked. “Is that the Rabbi?” My husband and I smiled. “No,” I said. “That’s Michael.”
My son Michael, or Mike as he prefers to be known, is a complex person. He looks like a rabbi with his “full beard,” but he can’t shave himself. He has a terrific sense of humor, but no judgment. He can learn languages—he taught himself to speak and read Hebrew by watching the Israeli version of “Sesame Street”–but he doesn’t know the difference between a quarter and a dime. He loves to travel—we’ve taken him across the U.S., to Israel, and to England—but he is afraid to ride a bus or train by himself. He knows all about cars but he can’t cross the street by himself. He’s fussy about his clothes but he can’t zip, button, or tie his shoes. He watches cooking shows and has devised recipes that we actually use, but he cannot cut food with a knife. When you meet him, he will ask you what your birthday is—don’t tell him the year—and he will remember it; but he often forgets which shoe goes on which foot unless we put a big L and R inside his shoes, and still he gets it wrong!
Mike, who is now 31, lives in a residence with five other men of varying ages, cognitive levels, abilities and disabilities. His apartment is run by a small agency. It took a while for him to adjust, and for us too, but with various adjustments and our constant input, I can say that Mike now lives an adult life. His residence is staffed 24 hours a day, seven days a week, by trained workers, many of whom themselves have family members with disabilities, but whose salaries are so low that almost all of them have to work two and sometimes three jobs. These workers help Mike and his housemates with activities of daily living: shaving, dressing, cutting their food, cooking, driving to the market, driving to the movies, the museums, the dance performances. The guys all contribute to the running of the house as much as they can: setting and clearing the table, making their beds, doing laundry, putting away groceries. Mike and his housemates all attend day programs in agencies such as YAI and the Jewish Guild for the Blind—one of his housemates is blind as well as developmentally disabled. None of them can travel independently. So in order to get the guys up, bathroomed, shaved, dressed, breakfasted, and downstairs in time to meet their buses, the two-person staff wakes the guys at 5 a.m. every morning. You try cajoling five grumpy guys out of their beds every day! Yet these workers do it day in and day out, along with administering meds, keeping track of appointments, holding fire drills, dealing with arguments, making sure chores are done…it’s an amazing amount of work.
Although Mike talks about buying cars for his future wife, he is not able to hold a paying job. One day he might, but for now he attends a pre-vocational program at YAI, where trained and dedicated professionals coach him in proper behavior and work habits. Mike works as an unpaid volunteer at non-profit work sites, where he has learned work skills: stuffing envelopes, walking dogs, shredding sensitive material, making lunches. It is a source of great pride for him, something I was very late in understanding. For years Mike told me that he wanted to become a doctor and I never understood why. Finally I asked him, and immediately he responded as if it should have been obvious: “So I can help people.”
Since Mike moved into his residence, we have all seen a maturity in him. With all his liabilities, he is more independent, more helpful, more sure of himself, more outspoken—if that is possible—than when he lived at home. It’s a funny thing when you have a child with special needs. You fight like crazy to get him to adulthood, and then when the opportunity arises for him to move out of your house as your typically developing kids do—if you are as lucky as we were—you cede control that you have held onto for 20 or 30 or 40 years. With our other adult children, we worried when they left home. Would they be happy? Would they find jobs? Would they call us once in a while? But when Mike left home, we worried: would he survive?
From looking at this photograph of Mike, no one would know what he has been through: the constant hospitalizations, the visits to doctors, sometimes two and three appointments a day, the medical bills, the juggling of time to create a semblance of a normal family life. But I am not here to talk about Mike’s childhood. I am here to talk about his adulthood. Make no mistake: the proposed budget cuts will take that away from my son and thrust him into a life no one in this room would want to live.
The enormous planned cuts, which are short-sighted in the least, would devastate my son’s world. Because of the fixed items in the OPWDD budget such as rent, there is no place left to cut except staffing, which comprises about 75% of program budgets. This will result in massive staff layoffs that will absolutely endanger people. For people like my son, it will do that and more. His day program staff and his residence staff are a safety net for him and for the more than 126,000 people served by OPWDD. If staffing were cut, how would I be sure his medications were administered correctly or at all? Who would remind him to brush his teeth? Who would tie his shoes? Who would remind him to shower? Who would keep his beard trimmed? Who would get him out of the apartment in case of a fire? Without someone to guide him, he could get anxious: he might out act and become aggressive. His present staff know how to handle these situations; an overwhelmed staff person might just call 911, and then what would happen to my son?
But staff do more than ensure the safety of people like Mike. They give them a presence in their and our communities. For people like my son, residence and day program staff also provide opportunities for giving back: to allow Mike and his housemates, and many, many other disabled adults, to become useful members of society. With the proposed budget cuts, staffing will be cut to the bone. Does anyone remember those pictures of Willowbrook in the 1970s? Those rooms full of disabled people sitting, some tied into chairs and wheelchairs, staring at nothing, losing function, becoming less human, with their liabilities increasing and their abilities fading because they were lumped together, dozens of them, with only one staff person to look after them? Or maybe no staff person? It couldn’t happen again, you say? Then I urge the legislators in this room to enact the proposed alternative solution that will give the governor his targeted savings without endangering my son or taking away his adulthood, and without devastating the people who work every day to give him an adulthood.
The first duty of any parent is to keep their children safe. The second is to raise them to adulthood to have a life of value. I raised all my children this way, including Michael. So for these reasons and more, I urge the Legislature to support a humane budget for OPWDD that saves money, saves jobs, and saves lives.