NCSA Letter to Oregon: Urgent Need for 1135 Waiver to Pay Extreme Family Caregivers — May 2022
Letter | May 23, 2022
To: Lilia Teninty (Director, Oregon Developmental Disabilities); Dana Hittle (Director, Oregon State Medicaid); Sara Gelser (Chair, Senate Interim Committee on Human Services)
Re: Urgent Need for Oregon 1135 Waiver to Address 'Extreme Caregiving' via Family Caregiver Eligibility
May 23, 2022
Dear Director Teninty, Director Hittle, and Chair Gelser:
Among Oregon's families supporting children with disabilities are a subset of families we know as "extreme caregivers." They support children whose disabilities are so devastating that they must devote 24/7 attention to them, often sacrificing their jobs and income for this purpose.
These families have found that little outside help is available owing to the strenuousness of the labor and complexities of the work, such as challenging behaviors, complex transportation needs, and recognition of medical issues such as absence seizures and respiratory concerns.
Allowing parents and family members to serve as paid caregivers is a win for children, families, and Oregon. Attendant care hours are already determined, approved, and budgeted. The only thing stopping thousands of children from getting the care and support they deserve is a single Oregon Administrative Rule.
This caregiving goes far beyond what anyone would consider normal parenting. These extreme caregiving situations include keeping a nonverbal 15-year-old who hits himself and scratches off his skin safe from self-injury; preventing a severely autistic 8-year-old girl with a cognitive age of 18 months from eloping or ingesting rocks; diapering a 200-pound young man who suffers violent meltdowns; careful monitoring of a disabled teen with autism and suicidality. These parents and family members engage in Herculean work to care for Oregon's most vulnerable.
National Council on Severe Autism urges you to not cut them off from life-sustaining support on July 15th, when the 1135 Waiver ends. These families are desperate for help and are relying on you to extend this reasonable, and cost-efficient, solution.
Very truly yours,
Jill Escher, President
