I am writing with concerns regarding the Application for 1915(c) HCBS Waiver: Draft VA.006.05.00 - Jul 01, 2023. While I agree with the overall content in the 4 main changes stated on page 1 of the Application, it is the details for the implementation of (3) Allowing for the provision of legally responsible individuals to provide the
personal assistance service that cause great concern.

I applaud DMAS for working to create 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.

However, the specific policies proposed in the attached 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 my belief 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 including the most medically fragile waiver recipients, minorities, and those in rural areas.  

The biggest barriers present in the application as drafted 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.  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 disability is so significant that they must use a family member for care.  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 in regards to living an integrated life in their home and community.