IRONDEQUOIT, N.Y. – A subtle change in punctuation could make a huge difference in the way people with severe disabilities are cared for.

The change is two brackets around one sentence in the state health law that helps people with disabilities remain in their homes. Whatever is in the brackets gets cut in the governor’s proposed budget. And what the governor’s office has bracketed affects more than 100,000 New Yorkers.

When Chief Investigative Reporter Berkeley Brean asked why, the answer came back, money.

Sarah Behan was doing her exercises with her mom Doris. Sarah has Charge Syndrome, a series of birth defects that cause heart problems, blindness, and short stature. She turns 41 this month.

Sarah qualifies for CDPAP, a consumer directed program that pays her mother to be her caregiver. 

Doris Behan, mother: “It allows me to be a paid provider so I can keep Sarah in her home where she chooses to be and, in the community, where she chooses to be and provide for her financially.”

Three weeks after her health commissioner testified to the legislature’s budget committee, the governor’s proposed budget added amendments including the repeal of designated representatives. There are the brackets that indicate the cut. DR-r’s, as they’re called, are unpaid but handle billing and timecard jobs.

Sarah has a DR. And so do more than 100,000 New Yorkers. Repealing DR’s could disqualify them from the care they get now.

Berkely Brean: “Why would the state want to do this?”

Doris Behan: “I believe what they’re thinking is this program is very popular because it gives the consumers the choices.”

Doris Behan: “And I think, they’re claim is it’s costing them too much money.”

Berkeley Brean: “The designated representatives don’t get paid any money. Why get rid of them?”

Bryan O’Malley, executive dir., Consumer Directed Personal Assistance Association of NY: “That’s a great question.”

Bryan O’Malley is the director of the association that advocates for people like Sarah.

Bryan O’Malley: “We keep hearing the program has been growing rapidly and there is a desire to curb the programs growth.”

Berkeley Brean: “Where does the state these people, these citizens that need help, are going to go? Do they have a solution that you’re aware of?”

Bryan O’Malley: “I think, to a large extent, they’re hoping that families will provide the services on an unpaid basis.”

Berkeley Brean: “For free? For free?”

Bryan O’Malley: “Yes. I think that is to a certain extent the hope.”