To the extent the proposed changes remove the choice of any recipient to use a consumer-directed model in hiring a personal care assistant, this change violates the very spirit of what a 1915(c) waiver is intended to achieve: the ability to live in one’s home and community with support. What is the rational basis for requiring a waiver recipient to hire care through an agency? This change will only serve to exacerbate existing capacity issues that exist for all consumers in finding qualified, committed and responsible personal care assistants. The reason recipients choose to have family members care for them are varied and legitimate: lack of stable care through agencies, lack of qualified care providers (agency or private), avoiding abuse and neglect, understanding that family members are in the best position to provide meaningful care and support. DMAS should make transparent any capacity study that DMAS conducted that would support the idea that there are sufficient agencies that are able to provide the unnecessary employment relationships DMAS would have created by these changes. We understand the need for DMAS to have oversight to protect the most vulnerable in our population. This, however, is not meaningful protection. This change (i.e., requiring family members to become agency providers) merely creates a level of unnecessary regulatory red tape and will serve to remove meaningful choice when agencies are unprepared to provide the employer function.
The proposed change also imposes a 40-hour limit for paid legally responsible family members. I understand that this is based on a CMS recommendation. Given that it’s a recommendation, and not a mandate, consideration should be given to the data-based reason for this recommendation? Is there any reliable evidence that fraud or abuse are prevented at 40 hours versus 20 or 50? Is there any consideration for the fact that some recipients require more than 40 hours per week of care and there is no other viable option besides family members (legally responsible individuals). Surely there are more effective ways of identifying these issues (such as requiring specific service facilitation services or monitoring) besides setting an arbitrary 40 hour limit based on a CMS recommendation.
The extraordinary care requirement is apparently a CMS requirement but there is no meaningful definition provided that would enable consumers and providers to understand what that means. One could argue that a legally responsible individual is legally responsible and, therefore, no care need would be extraordinary. What are the specific, objective and normed criteria that “extraordinary care” is measured by? Using such vague terms that are subject to multiple interpretations without objective standards and definitions that are readily accessible to any person that would use or evaluate the subject services effectively removes meaningful opportunity for consumers to utilize the services. Please define what this means and use objective data to support that definition.