In N.Y., 'Families Cannot Be Caregivers Forever Campaign' Seeks Funding

Althea Penepent, right with her
daughter-in-law Jeanne and daughter Valerie

BYRON, N.Y. – Althea Penepent often wonders (and worries) what will become of her daughter Valerie after she’s gone. So, Althea has joined a growing number of families across New York State advocating for expanded services for people with intellectual and other developmental disabilities. The “Families Cannot Be Caregivers Forever Campaign” calls current funding in the New York State Budget completely inadequate to meet the needs of these New Yorkers, many living at home with aging parents.

Valerie is the seventh and youngest child of Althea and Richard Penepent, born Feb. 2, 1977. Althea shares that her pregnancy and delivery with Valerie were the same as her first six children. She was blindsided when her doctor came into her hospital room after Valerie was born and coldly stated, “Women over 40 shouldn’t have a child because she’s mongoloid,” then turned on his heel and left. A nurse’s aide called Richard Penepent, plowing snow in the aftermath of the Blizzard of ’77, to come talk to his wife.

Parents, Advocates Blast Housing Plan

TRENTON — One parent of a man with autism called it confusing and terrifying. A housing developer of community housing for people with developmental disabilities called it "a misguided social experiment."

Marsha Adams testifies about
 her son who needs 24-hour care.

The Christie administration's sweeping proposal to promote community living and wider access to jobs and activities for the developmentally disabled was roundly criticized at an Assembly hearing at the Statehouse Thursday. Parents, advocates speciality home builders and community agencies said they feared the Department of Human Services' blueprint to spend a large portion of its Medicaid funding could disrupt the living arrangements and daily routines of thousands of people.