Our family strongly supports LRIs to be paid caregivers and allow LRIs to access and use respite hours as well as removing the 40 hour weekly limitations on care. 

Our son has autism, language impairment, cerebral palsy, epilepsy, visual impairment, intellectual disability, as well as kidney disease and a genetic disorder that causes tumors to grow. He is, to put it mildly, complicated. 

 Keeping him safe in day to day situations as well as emergent ones is our priority. And as the parent who has stayed home with him his whole life, who has his medications and diagnoses and doctors orders memorized, who knows him well enough to tell when he is sick or seizing, I am best suited for caring for him. 

We have used paid caregivers in the past for our son. Some are lovely and kind and care very much for him. Some smoke and don't believe in flu and covidvl vaccines and prefer looking at their phones. Finding a competent caregiver feels like rolling the dice especially for the poor pay offered. A babysitter for typical children is paid more than we offer someone to watch a child who has fall risk and seizures. 

The amount of work that goes into caregiving is immense. The amount of paperwork and monthly meetings that we must do to access paid caregiving services is overwhelming in a life that is already teeming with therapies and doctor appointments. 

The change this year of removing respite services from paid parent caregivers feels like a punishment for wanting to be the caregiver for my child. The rational behind it is cruel. The mental load of planning and caregiving as well as the mental health issues many parents of medically complex children suffer should make respite more needful. 

And finally, we support making changes to the requirements to be a SF. There is a lack of providers and the frequent changes Also put some more of a burden on parents as they then need to stay updated with different people and keep track of constantly changing contact information.

To sum, we ask for kindness and consideration of parent caregivers to make our lives easier And give us the choice of caring for our children without losing out on respite hours and spending all of our time trying to stay on top of paperwork and meetings and service facilitators instead of enjoying living our lives with our children and doing our best to keep them safe.