Thank you for the given opportunity to comment on the upcoming proposed regulation implementation to the renewal Application 1915c HCBS Waiver Draft. After carefully reviewing the proposed regulations and requirements, for having a family member be a paid attendant who lives under the same roof as the individual receiving services, I am concerned that implementing these regulations will have a detrimental effect on the quality of care and support my adult son is currently receiving through the HCBS program.
The HCBS Waiver program recognizes that many individuals at risk for being placed in medical facilities can be cared for in their own home and community, preserving their independence and ties to family and friends at a cost no higher than of institutional care.
The Covid-19 pandemic exacerbated the work force shortage and high turnover due to low wages and physical demands of the job.
My adult disable son was diagnosed 26 years ago with Severe Autism, Language Impairment and ADHD, he is currently receiving HCBS through the CL waiver, allowing me to have the opportunity to stay at home and provide him with the proper care and support he needs. I wouldn't feel comfortable entrusting the care of my son to anybody who is not highly trained in the complexity of his disability. Many parents like me have left high paying jobs to prioritize our children's needs. We do it out of love, compassion and commitment. Additionally, we can provide more flexible hours than other providers and continuity of care.
Aside from continuous advocating for your special child's needs on top of parenting, you are committed 24 hours a day to them, making sure your loved one will not be exposed to abuse or neglect. They need encouragement, reliability and continued support. These is crucial to their development and success. I want my son to have the best possible quality of life he deserves and be able to thrive in his own environment.
I'll admit that at times caring for our loved ones is exhausting at times, we must adopt the role of mediator, advocate, researcher, and more, filling the gaps in institutional policies concerning people with disabilities. It's continuously facing obstacles and barriers, so that our loved ones can be served and treated with respect and dignity.
The implementation of the regulations VDMAS is proposing, has no logical reasoning to me, it's another obstacle in our already busy life as caregivers. We Parent Care Givers are required to provide written objective documentation as to why a family member living under the same roof as an individual being serviced is the best choice to be the paid attendant. We are also required to place advertising, interview notes, doctors notes addressing behavioral needs, etc.
I understand and agree with VDMAS of ensuring and implementing a plan of care/plan of support to be implemented and monitored adequately. Proper supervision will ensure that a parent caregiver is fulfilling the needs and plan of care of the individua being served. I believe both VDMAS and Family caregivers can find common grounds by implementing regulations that will safeguard the interest of our already challenged children.
Why impose restrictions that would affect the quality of care and support of our children? What reassurance do we have as PCA, that these changes in regulations will result in a positive continuation of services or bring stability to our loved one? What guarantees we have as parents that our children are going to be attended properly by an outside stranger that is not properly train on a particular disability?
Please, reflect and reconsider carefully the repercussions these regulations may cause in the lives of many families who have committed their time and energy in providing the best care and support to their children.
I am confident that DMAS will deliver a positive resolution to this matter.