I am a father of an extraordinary 3-year-old girl who was severely abused by her biological father, leaving her with lifelong injuries. Despite her trauma, she remains a bright and loving miracle. However, due to this trauma, it is extremely hard for her to trust others with her personal care.

My daughter is not alone in this struggle. She represents thousands of disabled children in Virginia who are affected by the proposed changes scheduled for implementation on March 1st. These changes would prevent Legally Responsible Individuals from continuing as paid attendants for consumers under the age of 18.

These proposed changes do not consider the unique needs and circumstances of each child. For many children like my daughter, their legally responsible individual - often a parent or guardian - is not just a caregiver but also a trusted figure whose presence provides emotional comfort and stability.

It's essential that we consider these factors when making decisions that will impact our most vulnerable population - our children. We urge lawmakers in Virginia to reconsider these changes and allow Legally Responsible Individuals to continue serving as attendants for minors under their care.

Unfortunately, DMAS is making it more difficult for parents (of minors) to provide personal care for their child. DMAS is enacting ‘new guardrails’ that will compel many parents of minors to become employees of agencies in order to allow them to continue to provide personal care. Forcing parents to become employees of agencies makes a mockery of consumer directed services and demonstrates a bias in favor of agencies and institutions.

DMAS has failed to address significant problems with finding and enrolling new consumer directed providers. It is not unheard of for new providers of care to have to wait 2-3 months to receive their first paycheck. Not surprising, many of these same employees quit without notice. And who can blame them? Where else does an employee have to wait 2-3 months before receiving their first paycheck? The delays in the process are exacerbated by an inability to track the progress of the paperwork submitted by families. This difficulty of onboarding new consumer directed service providers, creates a disparity in favor of agency and institutional services.

DMAS as a government agency that is supposed to work for the people of the State of Virginia, has the responsibility to ensure adequate providers are enrolled so that their Medicaid members are able to have the access they must have to services. But in all honesty, if it wasn’t for the fact that many parents step up to provide care for their family member- the system would collapse. It seems strange to me that even though the system does not function correctly without these parents, DMAS would rather assume the worst of intentions on the part of these same parents. Many of these parents have made huge sacrifices of their own careers to ensure the care and safety of their loved one. My wife left a career to do this exact thing. She was employed by the University of Virginia for over 18 years and as a family we had to make the decision between caring for her career or for our daughter. Even with the ability to get reimbursed for some of the time as a paid attendant, my wife has taken a massive cut in income.  

DMAS is also making it impossible for parents to be the EOR (Employer of Record). The EOR is an unpaid position that also has significant access to personal information and details of attendants and the person receiving waiver services. This role of the EOR is vital to the safety of the individuals that are involved, and I could not think of anyone that would be able to put the best interests and care for these children further to the forefront than their parents. With that being said, expecting families to have a friend or neighbor act as an EOR (instead of a parent or guardian) forces families to disclose personal information and also takes away their right to act in their loved one’s best interests. In some instances, a court appointed legal guardian would not even meet DMAS’s new requirements for acting as an EOR. This is absolutely absurd! How can this fact be justified when you think that these people have been legally, and court appointed guardian for these children but with these regulations would not have the ability to act as the EOR. It is not right that DMAS has decided that EOR’s must live within 50 miles of the person receiving services or that the EOR can’t be an LRI? By its very definition, a guardian or LRI is supposed to act in the best interests of the individual with a disability, but again we go back to the fact that DMAS appears to assume the worst of intentions on the part of parents and guardians.

DMAS has stated that CMS is requiring these new ‘guardrails’ in order to continue to allow parents of minors and spouses to provide personal care. While CMS wants new guardrails - the guardrails proposed by DMAS are their proposals- and unfortunately, they place an undue burden upon families. This is the equivalent of a child telling a parent that “my friends made me do it”. I wouldn’t accept that excuse from my child, and I refuse to accept it from DMAS!

Virginia’s families are depending upon you to compel DMAS to address the problems in the proposed changes.

I am attaching an article that discusses this topic further.   

https://www.virginiamercury.com/2023/05/08/godsend-caregiver-program-for-virginians-with-disabilities-set-to-end-this-fall/

Thank you for your time and timely attention to this vital matter for the most vulnerable of our society.

Please join me in advocating for these children's rights and sign this petition today!