I would like to express my strong opposition to the proposed changes to the caregiver waiver program, which has provided invaluable support to families, like mine, with children who have special needs. I am grateful for the opportunity to share my perspective on this critical matter.
As a 43-year-old single parent, I am the sole caregiver and provider for my two children, a 10-year-old daughter and a 13-year-old son with Autism Spectrum Disorder (ASD). I have a Bachelor's degree in Anthropology and am close to completing a Master's degree in Special Education. Over the years, our family has faced numerous challenges related to my son's disability, including difficulties in finding reliable childcare, job loss due to inability to find adequate childcare, financial struggles, and the emotional turmoil of navigating a complex web of support services.
We have been fortunate to receive customized support and guidance from our case worker at VAIL over the past four years. This personalized approach has been invaluable in addressing my son's needs, and our case worker has successfully established a positive relationship with him, which is no small feat. The proposed change, which would mandate training and hiring through a home health care agency, would disrupt the tailored support we currently receive and could hinder the progress we have made thus far. Perhaps offering the home healthcare agency as an option for consumers opposed to mandating it would be a more fitting solution?
The one-size-fits-all approach of the proposed change fails to consider the unique circumstances and needs of each family. Limiting attendant care hours for legally responsible adults to 40 hours per week would take away my means to financially support my family, as I already face very
limited employment opportunities due to the need to provide constant care for my child with disabilities. I know that my family is not the only family that will be financially impacted to a devastating degree by this change. Lastly, limiting attendant care may negatively impact the progress and development of those with disabilities.
I urge you to reconsider the proposed change and to take into account the diverse challenges faced by families with disabled members. Implementing a new agency in lieu of the personalized support we currently receive from VAIL could create an unwarranted disruption in one of the few aspects of our lives that is effectively supporting my son. Please prioritize the well-being and progress of individuals with disabilities and their families by maintaining the current consumer-directed option for attendant care and the tailored hours approved for legally responsible adults to be paid caregivers.
Thank you for your attention to this critical matter.