Please see my public comments towards the possible new Medicaid Rule for Family as personal care aides. The suggested changes that DMAS is presenting do not enhance or partner with the current waiver guidelines but simply make it more difficult for each Parent to provide the best care for their child / children. For my particular instance, we have two boys that are disabled and my wife is the primary Personal Care Aide for both. We believe that the most competent person to care for our children is my wife, simply based on the fact that she has the most experience helping them perform their day to day functions. My boys are both non-verbal and non-mobile. I’m only noting this because the interaction and experience in recognizing our children’s needs is not a simple task. But one that is cultivated over time to learn cues, tips, and indications of need. This is one example of how a parent is the best care giver simply based on experience and time together. In putting these restrictions in place, DMAS is creating more hoops to jump through to be in a position to best care for our children.

Please allow me to address some specific changes to the FIS Waiver:

1). “The parent or spouse must show that the care he or should would be paid for is ‘above and beyond’ what a legally responsible individual normally provides.”

• In order to quality for attendant care in the first place, there is an approval process showing the additional care is necessary. Why would we implement this additional step, if that need has already been proven to even qualify for the program in the first place? This change with in the waiver is subjective and puts an additional qualification step in the process that has already been addressed.

2). “The parent or spouse must give ‘objective written documentation’ at the time of service authorization that shows:

               a. that there are no other options to the parent or spouse providing personal care, including no other service provides; and

               b. that the parent or spouse’s personal care is in the best interest of the person receiving services.

• With the attendant pay being as low as it, it’s nearly impossible to find qualified professional care. Resulting in the inability for one, or at times both parents, to enter the workforce. We utilize graduate students at VCU for the majority of our attendant care. The duration of time we work with each individual is roughly 2 years, because after they graduate they enter the workfoce and find a “real job”. Meaning one that pays them adequately. To say that we must present written objective documentation showing that there are “no other options” is naïve the reality of the current standards. You can be hired for $18 at Walmart as a cashier, but we have ~$12 to find qualified individual to help care for our children’s day to day needs.
• My wife is the best personal care attendant my children have. She utilizes the tools provided to her to put our children’s best interests first. While we have an incredible team of doctors, nurses, PT’s, OT’s, and educators providing guidance, my wife is the one who takes all of that and creates a cohesive lifestyle. The only interest she has is seeing them be successful.

New Limits to the personal care aide:

1). The parent or spouse must be employed by a personal care agency, and they must meet the same requirements as other personal care aides;

• Why? Does the consumer directed model not work? By adding an agency you’re adding more cost to the system and additional hoops to jump through that only muddy the waters. The Consumer Directed model still has guidelines and regulations for accountability.

2). The parent or spouse is limited to 40 hours per week of paid care;

• The time prescribed for each individual is already being assigned and should not just be a flat number, but rather one that is specific to each individual’s needs. Care is individualized, specific to each. When a set number is in place, you’re taking the individual out of the equation.

3). Respite is not available to the parent or spouse;

• Being a paid provider is acknowledging that the duty being performed is in replacement of the ability to work. Every parent needs a break and by removing the respite care you’re not acknowledging the fact, that to be the best caregiver, some personal time is needed. Respite care is a chance for a caregiver to be an individual. By removing that respite relief you’re not considering the human behind the caregiver.

4). The parent or spouse must be employed by an agency licensed by either DMAS of DBHDS and one that will manage both services and payment

• Again, the consumer directed model has proven itself to be useful and reliable. The current system isn’t overly efficient but by adding an agency into the mix I can assure you it will be even less efficient. Given the costs associated with new licensed agencies, I don’t understand the need. In addition, by adding these additional steps, getting someone onboarded and through the process will only prove to be more difficult. Let’s focus on making better what we currently have prior to trying to change things entirely. If we were to put the resources allocated for this agenda into fixing what is currently in place, we would save money and provide better care for those who need it the most.