The Virginia Down Syndrome Association, in representing the families we serve, objects to the proposed 2023 changes in the FIS DD waiver renewal requirements that impose limits on paid care by a legally responsible adult (i.e., parent or caregiver) as below.
Proposed change: The legally responsible adult must be employed by a personal care agency and thus meet all of the same requirements as other personal care aides.
Concern: this requirement removes the power from the consumer to choose between self-directed and agency-directed services. It also limits access to waiver services for individuals who live in an area with no agencies to provide services or for individuals who cannot access agencies for other reasons. Also, the requirements for agency-directed attendants are significantly more difficult to achieve and maintain than consumer-directed attendants. This places an undue burden on parents of children with disabilities for whom they care full-time.
Proposed change: A legally responsible individual will be limited to providing 40 hours of compensated care per week.
Concern: This imposes artificial limits on the number of waiver services an individual can access. Forty is an arbitrary number and not based on the individual needs of the waiver participant, nor does it follow the service authorization process. Furthermore, live-in attendants who are not 'legally responsible adults' have no limits on hours worked, and non-live-in attendants are limited to 40 hours plus 16 hours of overtime. The care an individual with disabilities requires cannot be measured by a 40-hour work week but only by the amount of care the individual needs to live a safe and meaningful life.