As the parent of a special needs daughter and a registered nurse, I cannot stand by idly as DMAS looks to limit my daughter's and my family's choice in how attendant care services are provided.
My daughter has been provided a community based waiver for over 11 years now. For the first 9 years we went through attendants due to different issues that any employer would go through- attendant life changes and unsuitable attendant care. It is incredibly difficult to find the right person to fill the role of being a care provider to a special needs child. You wouldn't just drop off your neurotypical child with just anyone, try finding someone with the patience, understanding, and willingness to learn (if they have no previous medical background) how to take care of a nonverbal, high fall risk assessed, cognitively impaired child. It's not easy. It's much more difficult. I would put out notices on Facebook that we were looking for a care attendant and nobody would reply with any interest. Since the pandemic we've been able to have a parent provide the care under the attendant hours and this has been nothing but a blessing to our family. She has received consistent care without having to worry about illness exposures when she's been the most vulnerable or turnover when an attendant gets the offer of a shiny new job that pays more with better hours.
You may think you are doing us a favor by introducing an agency to provide care, but agencies are notorious for their high turnover rate. In a benchmark study in 2021, the Homecare Association of America, the caregiver turnover rate for 2020 was 64.3%- that was celebrated as a "huge victory" for their industry, as in 2019 the turnover rate was 65.2%. They are also are trying to help agencies find ways to fight the recruitment crisis. That doesn't bode a lot of confidence when you are trying to tell a group of typically well informed, special needs parents that this will be a better option going forward for their families. As parents we would be subjected to the agency's rules and policies once we are under their employment, taking away our rights under the consumer directed waiver, in our own homes none the less. It's no longer consumer directed, it's agency driven. If a parent is the caregiver there is no turnover rate, but a consistent, knowledgeable, compassionate caregiver. This actually relieves stress on a family. It's hard to find employment when you have to be "on call" outside of a hired attendant's hours. If a child gets sick at school, a parent would have to leave work to care for them. Frequent hospitalizations can eat up FMLA, sick time, and paid time off in no time flat. Parents do not get paid during hospitalizations under this program, but we don't get paid under FMLA either unless we exhaust our PTO with an employer. The anxiety of worrying that an employer may find you unreliable, not able to consistently do your job because your first concern is the well being of your medically fragile child is maddening. Add to that, finding employment that is flexible enough to work with you and whoever you can find to care for your child while you work is even almost an insurmountable challenge. A paid family member doesn't have worry so much about that, they can still provide for their family and be the best parent for their child. An extraordinary needs child needs an extraordinary caregiver, and ultimately the parent is the best and first choice. Ultimately, respite is needed for that caregiver, and taking away those respite hours from the consumer is adding stress back to the family. Our family has one part time respite provider and her work is invaluable to our family. She's been with our family since 2012, we've gone through several attendants but she's stuck through with us. She has helped care for our child so that we can focus on other tasks that wouldn't get done otherwise, like grocery shopping, cleaning getting an overdue haircut or even giving us a break so that we can take a shower that we haven't had in almost three days because we've been caring for our sick child and haven't left their side. Hours under this program have already been limited over the years and now you want to cut more.
Under the new program, we have to demonstrate, prove to you, that we have no other viable options for caregivers and be subjected to a case manager from the agency to make sure we're doing our job.To be paid under the current program with Consumer Direct, you have to submit to a Virginia criminal and DSS background check, fill out an i9, do human resources paperwork, turn in time sheets, the employer if record had the verify the work was done so that the attendant can be paid. Why is it implied somehow that there is no oversight or current compliance? My child already has a service facilitator and a nurse case manager through Virginia Premier, each do in person or by phone checks quarterly and if I have any questions or concerns they are available to me. If we have payroll issues, we can call Consumer Direct and speak with someone. How many more layers of bureaucracy can we add to this? How much more insulting can you be to families? How is this streamlining services? It's not clearly defined in your proposal.
We all know what this really comes down to- money. The Virginia DMAS needs to save some money, and our children's program has been targeted. But how much money will this really save? The hourly wage isn't truly a competitive, enticing wage that would keep someone in a demanding attendant care position. You are duplicating efforts and cutting much needed programs. What will be done with the cost savings? Virginia has a budget surplus of over three billion dollars and even the cost adjustments and increases over the next year are projected to be covered mainly by the Federal government with a projected increase to the Virginia budget of $12.3 million, which according to DMAS CFO Chris Gordon, "that's a tiny amount".
I've not seen one piece of quantitative or qualitative analysis that shows how this will be better for children, families, or even the Commonwealth itself. Virginia has not even surveyed the affected population in the last 12 months to see how things are going. On page 287 of request, the states admits it has not, "deployed a patient experience or quality of care survey for the HCBS population in the last 12 months". It was said in 2017 when third party insurances companies would manage the care of Medicaid that it would be better. It's added more layers of red tape and has added to The overall cost of administrating the Medicaid program.
Overall targeting our child's program is discriminatory and lacks true insight in how our lives are affected by the programs provided or not provided by the waivers.