As the parent of a child with significant disabilities who currently receives Appendix K I have significant concerns regarding proposed changes. As our son gets older and bigger, heavier and taller, it has become more and more difficult to find caregivers who are willing and capable of meeting his needs.   

 

As written, these regulations erect significant barriers to waiver participants accessing vital waiver services:

 

"The legally responsible individual must be employed by a personal care agency, and thus meet all of the same requirements as other personal care aides." Requiring legally responsible individuals to become employees of an agency does the following 3 things:

 

1. Places a significant additional burden on caregivers who are already caring for their loved ones 24/7 by requiring that they meet the same requirements of other personal care aides, which entails, among other things, completing a training curriculum consistent with DMAS requirements and passing an objective standardized test of skills, knowledge, and abilities approved by DBHDS. These caregivers have already been identified as the most qualified individuals to care for the waiver recipient, already have the necessary training and experience from years of providing care for the specific individual, and can identify nobody else to provide the care that they are providing on a daily basis. They are unable to leave their individual to attend training or testing for certification, making it unlikely that they will be able to meet these requirements necessary to be paid as an employee solely due to their existing caregiving responsibilities - because the very nature of the service they are providing means there is nobody else to provide this care.

 

2. Imposes an artificial limit on the amount of waiver services an individual is able to access ("Legally responsible individual aides shall be limited to provide 40 hours of compensated care per week.") It is not based on the individual needs of the waiver recipient, nor does it follow the service authorization process. Furthermore, live-in attendants who are not "legally responsible individuals" have no limits on compensated hours worked other than the total number deemed necessary for the waiver recipient's needs as determined by the service authorization process, and non live-in attendants are limited to 40 hours plus 16 hours of overtime per week.

Per the "2.27.2003 -FACT Sheet: Reimbursing Legally Responsible Individuals" the stated rationale for the limitation on reimbursed service hours is that "CMS has cited 40 hours a week as a potential safeguard." I must ask, safeguard against what? Surely, not against a legally responsible individual being overworked, as they have no choice but to provide the care their loved one requires, whether or not they are reimbursed. It appears the only thing that is being 'safeguarded' by imposing an arbitrary limit on the number of hours reimbursed is state money, at the expense of the health and well-being of waiver recipients and their caregivers.

 

3. Strips waiver participants of the right to choose between self-directed and agency-directed services, directly contradicting the statement in Appendix E: Participant Direction of Services on page 228: "Individuals are afforded the opportunity to act as the employer in the consumer-direction of personal assistance, respite, and companion services." Removal of this right to choose is based solely on the participant's disability and extraordinary care requirements that result in the need for a legally responsible adult to provide care. It penalizes a waiver recipient based on the level of their care requirements.