As a parent of a 2-year-old son with a rare medical condition and special needs, I wanted to express my concern regarding the potential for parents to lose their ability to be paid, live-in attendants through the consumer-directed model.

 

Our son has a condition that only around 1500 people have ever been diagnosed with. His medical needs span ventilator dependence, IV nutrition dependence, multiple malignant neuroblastoma diagnoses, and other gastrointestinal complexities. Our family has benefited greatly from one of us being a paid live-in attendant through the consumer-directed model. It has taken the burden off of managing another agency or service provider while we juggle multiple specialists, in different geographies, along with durable medical equipment suppliers, home infusion companies, and other service providers. The consumer-directed model allows us to access our entitled benefits seamlessly and any change to that could threaten our ability to access the benefit.

 

Families with children that have medical complexities have enough to manage and advocate for - please do not put impediments in the way of us accessing valuable benefits. Please retain the consumer-directed model for paid live-in attendants and put families with children with special needs first! Thank you.