I am writing with concerns regarding the Application for 1915(c) HCBS Waiver: Draft VA.006.05.00 - Jul 01, 2023, specifically the details for the implementation of (3) Allowing for the provision of legally responsible individuals to provide the personal assistance service.  While considering the regulations, after all is said and done, the practical goal and heart of the humanity behind them should be to care for the lives of the disabled and their families and elevate the ease in which this care is delivered for the flourishing of us all.

It is commendable that DMAS has undertaken the creation of regulations that would allow legally responsible adults (parents of minor children and spouses) to be paid providers of waiver services, specifically personal attendant care services. These services are very much needed for many individuals with complex medical needs, individuals in rural areas, and many other individuals who have proven that they are not able to access any other waiver service for unique reasons.  In addition, for the first time for many disabled individuals, they have had continuity of care through this spouse or parent caregiver, whereas prior to Appendix K, many attendants were drawn away to higher paying positions.  Oftentimes children with disabilities are impaired in their communication, and learning to understand how they convey their needs and wants takes time and concerted effort.  Our daughter is non-verbal.  Who better than a family caregiver who has already learned these nuances to help them integrate in their community activities?  Who better than the parent who attended the therapy session to incorporate that into the child’s day and who better to assist them at the medical appointment in which they are struggling to comply?  Moving toward the inclusion of parents of minor children as paid caregivers was an excellent step forward.

Therefore, it is unfortunate that the specific policies proposed in the HCBS waiver application include barriers to this waiver service that will make it very difficult for many FIS waiver recipients who have been accessing personal attendant care with a parent or spouse provider under the pandemic related Appendix K to continue to do so. In fact, it is the opinion of many that the regulations as drafted would actually prevent the access of this waiver service in any real life situation for many people who need it most, as in our situation living in a very rural isolated area in the least populated county in Virginia.  

The biggest barriers in the drafted application are as follows:
1) Requiring legally responsible adults to become employees of an agency.
This is a barrier for multiple reasons. First, by definition, this service is a service of last resort. The individuals who are accessing this service are using parents and spouses as providers because there literally are no others to provide care for their individual with a disability. They cannot leave their individual to find an agency to hire them, complete employment paperwork, and travel and attend the lengthy trainings required on page 78 of the application.  In our family, we have utilized consumer directed services for over a decade and have been the ones to train our attendants when we lived in town and could find attendants.  Families are heavily burdened with so much additional paperwork for the keeping of services, medical records, therapy, and applying for grants.  There is already a system in place that works for the training and supervision of families who are providing care for individuals with disabilities in their own homes - services facilitation. The service facilitator is able to come to the home of the individual with a disability and provide the needed oversight and training in the individual's home with the EOR, attendant and individual. Second, this is a barrier because it strips the individual with a disability and their family of the choice between consumer directed services and agency directed services. Individuals with disabilities should not be stripped of their right to choose self direction simply because their location is a barrier to attracting other candidates. Again, there is already a working system in place - services facilitation - and no need to replace it with an untested agency directed system. There are other states including Florida, California, Connecticut and Maryland who allow legally responsible adults to provide personal care services through a self-directed model.

2) Another barrier is the 40 hour limit on hours. Individuals with an FIS waiver have service limitations on hours set through their ISP and an approval process through DBHDS / DMAS in WAMS. Most of the individuals requesting a legally responsible adult as a wavier provider do not have anyone else to provide services for additional hours that are approved above 40 (if they have additional hours approved above 40). If they had an unrelated caregiver not living in their home, that caregiver would be able to work 40 hours a week plus 16 hours of overtime for a limit of 56. If they had a family member who was not a legally responsible adult working as a consumer directed attendant, that person would have no limit. I am suggesting a limit of 56 hours to match the unrelated caregiver limit if a limit must be imposed.

Thank you for your time in reading this public comment and for considering the needs of individuals with disabilities and their families.  Let us all continue to create a world in which the disabled are valued in word and in action, in days of awareness and in bureaucratic regulations.