By Margaret Raustiala, Commentary
My son Riko is 46 and has autism. He is helped by workers employed by nonprofits that serve people with developmental disabilities.Many people's knowledge of autism is based on Dustin Hoffman's Oscar-winning portrayal of autistic savant Raymond Babbitt in "Rain Man." But that's Hollywood. Riko enjoys music, walking outdoors and volunteering at a soup kitchen, but he needs a direct care worker to do any of these things.
Riko is one of 128,000 New Yorkers with developmental disabilities who often cannot speak for themselves and rely on direct care workers for their health and safety. This includes bathing, feeding, toileting, medication administration, teaching basic skills, ensuring community integration and crisis intervention.
For nearly a year, the #bFair2DirectCare Coalition — people with developmental disabilities, their family members, direct care workers and the agencies that employ them — has been asking Albany for the funds so our direct care workers can receive a living wage.
Staff shortages threaten the very community integration that's required by the federal government and exemplifies a quality system. Without adequate staff, Riko and others are virtually under "house arrest" in their group homes or day programs. With a vacancy rate of more than 10 percent and growing, and a turnover rate of more than 24 percent and growing, robust community integration programs threaten to disappear.
This burgeoning care and staffing crisis can be solved if Gov. Andrew Cuomo and lawmakers dedicate $45 million year for the next six years, starting in 2017-18. That's a small investment in a $152 billion budget to avoid a crisis that has real-life implications for so many.
Sadly, Cuomo failed to provide any funding for a living wage in his budget proposal. We can't know what's in his heart, but we know what's not in his budget. And we know he is worsening a growing crisis. Ultimately, the state will need to take over care — a development that will be much more expensive for taxpayers.
Direct care work is not minimum wage work. It requires sophisticated skills, hours of training and the ability to handle tremendous stress.
Until a few years ago our nonprofits had been able to attract and retain workers by keeping wages higher than minimum wage. Recruitment and retention was a challenge, but we could handle it.
That all changed, with the one-two punch of stagnant rates and the increase in private sector wages mandated by Cuomo and the Legislature now under way.
As direct care wages continue to fall further behind wages in Wal-Mart, Target and Costco, our workers are faced with the difficult choice of keeping a job they love or earning enough to make a decent living.
Our hands are tied. We get 90 percent of our funding from government. Albany decides the rate. We can't raise prices or automate hamburger production. Direct care work requires people. Yes they have good heads and big hearts, but they have to feed their families, too.
I am frightened for Riko and other New Yorkers with developmental disabilities. Not only do they depend on their care workers, but they form important family-like attachments.
Just a few yards from Cuomo's Capitol office, there stands a display with a remarkable statement expressing New York's global standard for caring, compassion and justice. It's a statement our leaders should heed right now.
"In New York, I have called this 'The New York Idea': government using its resources to help create private sector growth, then requiring those who benefit from that growth to share some part of it so that hope and opportunity are extended to those who have not been as fortunate. We do this so that we can take care of those who will never be able to care for themselves."
The author was Gov. Mario Cuomo.
Margaret Raustiala is a parent, retired coordinator of the Alliance of Long Island Agencies Inc. and a member of the #bFair2DirectCare Coalition.