After 35 years as a nurse, Mary Mann left her position at Highland Hospital to care for her daughter Claire, who has Angelman Syndrome, a rare neuro-genetic disorder.
“I loved my job. I loved what I did, but I love my daughter more,” Mann shared.
To support Claire’s at-home care needs, Mann and her husband turned to The Center for Disability Rights (CDR). For 25 years, CDR has acted as a fiscal intermediary for the state’s Medicaid-funded Consumer Directed Personal Assistance Program (CDPAP), which enables people with disabilities to hire home care providers and maintain independence. Family members can also serve as care providers under this program.
“Group homes are closing. Nursing homes are backed up,” Mann explained. “We don’t want our loved ones in a facility. We want them at home with us—that’s why we are fighting.”
The Manns are advocating for CDR to retain the Medicaid funding it uses to manage CDPAP. However, the state plans to overhaul the program by partnering with a for-profit company, Public Partnerships LLC (PPL), to oversee it statewide. PPL would subcontract with home care agencies across New York.
CDR officials warn that this change could reduce the center’s revenue by more than 80%, potentially disrupting home care for current recipients and resulting in the loss of about 800 jobs.
“This isn’t about your neighborhood plumber you call once a year,” said Susan Stahl, a veteran disability advocate with CDR. “This is about the person who helps you in the bathroom, cooks your meals, and performs deeply personal tasks that you don’t even share with your spouse.”
Mann emphasized the irreplaceable support her family has received from CDR. “If it’s not broke, don’t fix it,” she urged. “Focus on the ones not doing their job, not the ones providing essential support.”
CDR is also urging local legislators to step in and support their cause.
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