Please consider signing this petition to implore the State of Connecticut, on behalf of families like mine, to fully fund the Katie Becket Waiver.
My son Isaac has Spinal Muscular Atrophy Type 1—a genetic, neuromuscular degenerative disease that is characterized by loss of motor neurons and progressive muscle wasting, often leading to early death. While there is a new breakthrough drug that increases life expectancy, a patient's everyday life still requires daily respiratory care/machines, endless therapies, adaptive equipment, and constant fear of any common cold or infection that could lead to prolonged emergency care.
My family and I moved to Connecticut from Massachusetts three years ago after my husband's job transfer. Due to Isaac's diagnosis, I can work only two days a week from home. We have fallen in love with West Hartford and were looking to buy a home here.
However, we are on a three-to-five-year waitlist to receive the Katie Beckett Waiver—Connecticut's state-funded waiver program for children under nineteen who have significant medical needs and require treatment at home. Because of this wait, it's impossible for us to stay in the state. We do not qualify for Husky Care, and we don't have the waiver to pick up what our insurance will not cover—most recently, an additional RSV vaccination, a medical stander, and possibly G-tube formula.
We are forced to move back to Massachusetts, where their budget does not place hard-working middle-class families on such a prolonged waitlist to receive funds to help cover expenses otherwise not picked up by insurance.
We are friends with an SMA family from Maine that just got a new job in Hartford. They settled in Longmeadow, MA, because they couldn't buy in Connecticut and live up to five years before getting the waiver for their daughter. Another tax-paying family interested in investing their life in Connecticut could not do so.
Many CT families with children with serious health needs may not be able to move to another state to receive the financial support they so desperately need. Many families will go into serious debt waiting years for financial medical support from Connecticut.
No family should not be forgotten in this state as it seeks assistance to care for terminally ill children.
