Last month, a 33-year-old man in one of our community residences used what is known as an augmentative alternative communication device to type a message to his older brother who was visiting him. Ordinarily, this might not seem unusual, given the circumstances. But before he had access to the device, this young man, who has developmental disabilities, had no way to verbally share his thoughts and feelings. So, when he told his brother, “Thank you for coming to see me,” his older brother was moved to tears. This was the first time ever that he heard his younger brother speak to him. This memorable expression of affection changed both of their lives. And it was an achievement that meant the world to us who care for the man and others like him.
This small success was not one reported in the news media, nor would we ever expect it. And that’s because of the unfortunate reality that society often judges people based on their manner of speech, color of skin, clothes they wear, or by the cars they drive. And for the 27% of Americans who have a disability, society tends to focus on their disability and not the person. The sad truth is that for the more than 7 million Americans with intellectual and developmental disabilities (I/DD), being overlooked is the norm. This slice of our population faces lifelong challenges that affect the entire trajectory of their physical, intellectual, and/or emotional development, according to the National Institutes of Health.
But that’s not all. Because of the many physical and health challenges this group possesses, a dismissive attitude prevails to let “others” perform the hard work needed to support these individuals as well as for those doing the noble work of caring for them.
Well, those of us in human services who represent the “others” and work with I/DD individuals, have seen the numbers of the people we support nearly double in 20 years from 728,704 in 1999 to 1.4 million in 2019. And those figures will only increase, especially as the parents and families of those with I/DD are becoming too elderly to care for them.
Additionally, the ages of those receiving support are rising as rapidly as their needs. In 2022, the NYS Office for People with Developmental Disabilities reported that of the 130,313 New Yorkers served, 61% are between the ages of 21 to 64, and seven percent are 65+.
At Rising Ground, our own I/DD programs have expanded 25% over last year to include more than 30 programs that provide services such as vocational training, housing, and employment at 26 locations, of which 29 are residential group homes.
We, the primary caregivers, are with these individuals 365 days a year: through crisis, illness, and trauma, as well as holidays, celebrations, successes, and major life events. We are an extension of their family, and in some cases, we are all they have. And we’re dedicated. It’s not uncommon to see staff work in group homes for 25 years or more, tending to the people we care for.
But we also go unnoticed.
As the numbers are growing of individuals with I/DD coming into our system, funding is not keeping pace. In New York, OPWDD sets the scale on how much we pay staff and it is often barely above the current minimum wage, making it extremely difficult to recruit talent to keep up with the demand of our services. And while a few State Medicaid dollars are available to support I/DD hospitalization, treatment often takes place in the residential settings we provide, denying the kind of healthcare and specialized services supports our clients often require.
As a result, the current system creates great disparities in accessing appropriate care and support, creating unmet health needs and a reduced quality of life. And that is unacceptable.
The difference between what we provide and what we need comes down to just three dollars more an hour per direct support professional. That additional $2 million would mean a real living wage of $20 an hour,ss to quality healthcare services and specialized support crucial for many with I/DD. And it is critical that as minimum wages rise, that this work not be viewed as minimum wage work. Given the intense and intimate nature of the support provided by direct support professionals, New York State must continue to increase their wages commensurate with the value of the care they provide.
But who’s going to argue the case? While we and the people we support march on Albany ourselves, along with a coalition of our colleagues to publicly demonstrate, sadly, adults with disabilities, and the workforce that supports them, don’t elicit the empathy that should merit. Nor do they possess the lobbying power that generates equitable treatment.
This financial paradigm is no longer one we as nonprofit providers can wage alone. To find the necessary revenue to adequately support our clients, the public must look beyond the disability and advocate for both those with I/DD and their caregivers. In doing so, we can truly build a greater society where no one is left behind and all can thrive.
Ryan Garofalo is senior vice president, Intellectual and Developmental Disabilities, at Rising Ground, a New York City based nonprofit that works to improve the lives of over 25,000 people every day.