Good morning. My name is Germaine Laviscount Scott and I am here to join my voice with those who are against the governor’s proposed 6% cuts to OPWDD’s non-profit agencies.
My son, Gregory Brandon Scott, is a 31-year-old young man with an intellectual disability. He lives at home with his dad, who has lung disease, and me, his mom—both seniors.
Gregory is a sweetheart—I realize I’m biased—who obviously experiences great joy when he manages to accomplish some small task that can be difficult for him, such as putting groceries away in the refrigerator. Because he is non-verbal, it takes a while to get a sense of who Greg is and to understand his moods and actions. Gregory has a playful personality and a love of eating. I often wonder if he had to choose between his mom and food, which he’d choose. He loves to listen to music and will break out in an expansive smile while mimicking me, as I sing “I Wish You Love,” which I’ve been doing for him since he was a toddler.
Greg has many needs: he has a seizure disorder which results in approximately two seizures a month; lymphedema in both legs and one hand, which entails swelling to those extremities; and Soto Syndrome, a rare condition that includes intellectual disability. Greg understands one-step commands if they are of a routine nature. He needs help in dressing, bathing, toileting, and grooming. Surprisingly—OR MAYBE NOT—he does not need help in eating. He is able to feed himself and wipe his mouth with a little help.
Greg goes to a dental clinic that specifically treats people with developmental disabilities. He could not be treated in a regular dental setting because he becomes anxious and nervous waiting to have work done; he is clearly agitated when work is being done. His dental appointments take much more time than would be allotted in a regular dental office.
At present, Greg attends a day habilitation program where he is involved in the kinds of activities which encourage him to do for himself, as much as he is able. He is given the opportunity to socialize, something that probably would rarely happen if he were only at home. Being in a day habilitation program has helped Greg’s interaction with people. He will actually stand up and dance—quote, unquote—with someone. He’ll even dance with me for ten seconds! He is taken on short trips where he is exposed to new situations and learns appropriate behaviors. He also goes on trips where he can just enjoy himself. Greg is now able to go to a movie, sit through it, and seemingly enjoy it. He has learned to focus and pay attention for a longer period of time, which is a critical skill but not always so easy to do.
Because of his lymphedema and contracted muscles in one leg, Greg walks with a slight limp. At his program, he receives physical therapy as well as occupational therapy. These measures are needed to maintain and improve his gait as well as his dexterity. All in all, the kinds of skills Greg learns in his day habilitation program are critical to his well-being as a person.
If the proposed 6% cuts go through, staff will be laid off. There is no other way to accommodate that large a cut. If there are layoffs, many like Greg will not get the hands-on care that they need, and some of the day habilitation activities which are really vital for Greg will be curtailed or eliminated.
Parents like myself, who want our loved ones with us, are not going to live forever. One day Gregory will need residential services. He will always need help as he goes about his daily living, and he will always need to be kept safe. Greg, and so many others like him, will need 24-hour, round-the-clock residential services. However, for the past several years, there was nothing in the budget for development of new 24-hour residential services, and this budget is no different. If the proposed cut is approved, new development of 24-hour residential services is out of the question for many, many years. The only choice will be a vacancy in an existing residence, but it will be sheer luck whether that vacancy can accommodate Greg’s particular needs.
If Gregory’s future does not include the option of residential placement, what will happen to him and others like him? Where will he end up? Will he be warehoused—which is turning the clock backwards? Will he wind up in a nursing home?
Nursing homes are not equipped, nor are their staff trained, to work with our loved ones. I slept on a cot by Greg’s bed for four months when he was in a nursing home after being hospitalized for two months with a fever of unknown origin. If I had not been there, I am convinced the situation could have become tragic! If I had not been there, he would not always have gotten all his medications, would not have been closely monitored, would not have been changed or showered as often as he needed. Anything could have happened. I had to speak up for him when he did not get what he was supposed to. A nursing home is not a viable alternative for our loved ones.
Many people with developmental disabilities are already in need of 24-hour residential services. They cannot wait forever. Our Assemblypersons and Senators must consider the future of our loved ones.
These cuts cannot happen! They would be devastatingly bad for our loved ones!!!!! We must keep our voices raised in opposition!! I thank you and Gregory, who cannot raise his own voice, thanks you!!!!!