We are writing in response to the current legislation concerning the role of the Legally Responsible Individual (LRI) in the consumer-directed model of service delivery. We are grateful for the Department of Medical Assistance Services' (DMAS) willingness to consider public comments, but we believe that the existing proposal fails to address many primary concerns that have surfaced from families utilizing waivers. If this were a traditional employer relationship it could be construed that DMAS were trying to implement constructive dismissal against parent-caregivers.
I want to point out that the excessive burdens of documentation, training, and process; insufficient hourly pay; inability to stay employed while caring for a severely disabled person; a lack of qualified personal care attendants; and the inappropriateness of electronic visit verifications for family caregivers are all points of concern. Furthermore, families firmly believe that they can best meet their loved ones' needs.
These concerns, in addition to my experiences, lead me to highlight issues with the 40-hour cap on compensation, and the restrictions on who can be the Employer of Record (EOR), the requirements for documentation, and lastly the ineligibility for respite care.
We find that the 40-hour cap fails to consider the complexity and demands of caring for a one person with high-level care needs let alone multiple, particularly in situations where no one other than the LRI can effectively provide care, for example with severely immunocompromised individuals. This cap not only restricts the care a member receives but also limits the family's income, further exacerbating financial instability. To counter this, we suggest that the State provide exceptions to the 40-hour cap based on individual circumstances and medical needs.
The current EOR restrictions, which require an EOR to be an external individual residing within a 50-mile radius of the LRI, also pose significant challenges. Given the unpaid and time-consuming nature of the role, finding a suitable EOR can be a daunting task for families. We recommend allowing a family member to be the EOR to streamline the caregiving process and provide more consistent care.
On the matter of data security, we have concerns about non-relative Employer of Record (EOR) being privy to an extensive amount of Personal Identifiable Information (PII), including Social Security Numbers and dates of birth to name just two. Given the unpaid nature of the EOR role, we question how DMAS plans to ensure that this sensitive information will not be subject to data breaches or leaks. When parents or relatives assume the EOR role, this data is already known and remains within the family unit, minimizing the risk of unwanted data exposure, which could otherwise lead to identity theft, and other significantly negative impacts associated with cyber-crime
Further, the suggestion by DMAS that friends could serve as EORs overlooks the harsh reality faced by many families with disabled children. These families often have limited social networks, as society can be unaccepting and ableist towards disabled individuals. Many such families have few, if any, friends outside their immediate family circle, rendering the proposed solution impracticable and highlighting the necessity of a more inclusive approach.
On the issue of electronic visit verifications and daily documentation requirements, we recognize the need for a monitoring system but believe it should not become an undue burden on LRIs. We recommend developing a streamlined process for documentation following an initial training and probationary period.
Finally, we believe the prohibition against respite care for LRIs is unreasonable. It's essential to recognize that those who dedicate their time and energy to care for their loved ones need time to rest and rejuvenate.
We urge you to consider these recommendations and work towards amendments that truly support families and their members with special needs.