Noa
Hi, my name is Ben Sahl. I’m a life-long Manhattan resident, and the father of a seven-year-old girl named Noa (without the “h”) who has developmental disabilities. I’d like to make a few brief remarks about the need for development of new residences—in particular, residences offering 24-hour care.
In order to explain why someone whose disabled child is only seven would be concerned about this issue, I’ll need to tell you a little about Noa.
Noa is enthusiastic, confident, joyful, and affectionate and has a wicked sense of humor. She loves surprises but hates being tricked. She loves swings, sitting on the couch reading stories before bedtime, and anything that sounds like a fart. In short, she is in every important respect like any other kid. What makes her different occurred months before she was born: a prenatal stroke resulting in loss of her parietal, temporal, and occipital lobes, bilaterally.
When Noa was first diagnosed, we were told she might never so much as sit up. Today at age seven, she not only sits up, but with assistance is able to walk with a walker, has very fine manual dexterity, recognizes and interacts with her loved ones, communicates her needs and wishes. Still, the symptoms of her injury will be with her for the rest of her life: intellectual impairment, impaired balance, muscle rigidity in the lower part of her body, sensory issues. She is non-verbal. She is completely blind. With respect to communication, she relies on tactile, or hand-on-hand, American Sign Language and falls within the federal definition of deaf-blind. She cannot on her own do any of the activities of daily life that we take for granted: she cannot put on pants, or scoop food with a spoon, or find her way to the bathroom. Even while she walks with a walker, because of her blindness, intellectual impairment, and physical rigidity, she needs someone to keep a hand on the walker to guide it. She travels in a wheelchair.
Noa currently lives at home with Jeni, Noa’s mom, and me. Jeni and I are very happy raising Noa at home and hope to keep her with us as long as we can, but we are aware that when the time does come for Noa to leave, it may not be as a matter of choice and it may be under conditions of urgency. Jeni and I are in our mid-forties, and Noa weighs fifty pounds and counting. Noa’s behavior has been manageable so far, but she can already express her frustration violently, and we have been warned that puberty can intensify such behavior. Jeni and I have each already blown out both of our shoulders wrangling Noa over the past seven years, to the tune of multiple cortisone shots and surgery, and we have our own unrelated health issues, in our case cancer and multiple sclerosis. Like virtually every New York family caring for a developmentally disabled child or adult at home, we are always only one piece of bad news away from not being able to continue to do so.
Noa is unlikely to ever be a candidate for residential care in any setting providing less than 24-hour supervision. With respect to such settings, both in the proposed budget and in OPWDD’s plans for the 1115 Medicaid waiver, the expectation is that the State can rely on openings arising through attrition in existing settings. The residential waiting list in Manhattan is over 500, and the number of those in urgent need–those who have already received that back-breaking piece of bad news–is over 40. There are not enough vacancies, simply as a matter of numbers.
But the problem is more serious than just a shortfall. Placement of an individual in a residential setting requires more than simply that some open bed exists somewhere. Placement requires that a suitable open bed exists. Noa won’t need just a highly supervised setting, she will need one which is wheelchair accessible, one where there are no residents who might knock her over or who yell or have other behaviors which would terrify her, one where there are a sufficient number of staff to provide the one-to-one help she often needs, one where staff can understand sign language, one that can accommodate a blind person. If you’ve ever had to make your house toddler-safe, imagine having to make an entire facility safe for an intellectually-impaired person who is also blind and who also can only stand up by holding on to the furniture. In other words, for Noa, there are likely to be no viable vacancies, and unless and until we build more residences, there are not going to be any.
The prospect of, on one hand, highly disabled individuals who need somewhere to go, and on the other, a lack of appropriate placements raises the specter of institutionalization. Many families fear just this, especially because of the enormous transformation soon to come in the way services will be funded and delivered under OPWDD’s new 1115 waiver. New York cannot afford to backslide into large congregate care settings. Not only would it be morally reprehensible, but the courts will not permit it.
OPWDD has to commit to creating residences for people who need 24-hour care—in particular, individuals with highly specialized needs like Noa. And the Legislature has to ensure that the dollars are available to fund that effort.
So we’re asking for two things: first, we want OPWDD to clearly and unambiguously and without qualification prioritize residential development. In its statements, in its planning, in its assumptions, in its budgeting, in its structuring of pilot projects under 1115. Second, as the economic picture improves in coming years, we want to see that commitment realized, both by OPWDD and the Legislature, through greatly increased funding for residential development.
Thank you for taking the time today to let us share our concerns.