I am the parent, and now guardian, of a child with a significant developmental disability. Given the disability, she should have transitioned from our local early intervention to our local CSB. Given her level of disability, the CSB should have discussed waivers, the application process, and the decision making to be done along the way. This did not happen until years after it should have and only after one of her teachers helped facilitate this.

Out of the gate, she received a waiver much later than she could have and arguably should have. This happened then, and happens now, because the many possible points of entry (pediatrician offices, early intervention programs, schools, etc.) often have little to no knowledge of the waiver system, the application process, or how it works. This is still the case. It is often poorly understood even by those within the system/s. 

Across the time that she has had the waiver, there have been changes to regulations, third party payers, and waiver structures. Each time any of those changes have been made there have been problems with identification of required documentation, what is actually required in that documentation, processing of that documentation, updating of documentation, etc. This has had predictable, avoidable and unwarranted adverse consequences such as denial of services, loss or reduction of services, delays in approval of attendants, and denial of pay of attendants, etc. This will happen again. You cannot say that this is unanticipated when it happens every time you make changes.

Asking “legally responsible individuals” to function as employees of agencies if they are going to function as compensated attendants or respite care providers is a blatant denial of consumer directed care and an ignoring of the history of the emergence of consumer directed care options. Agencies in Virginia are ill equipped to do what these changes ask. For many in Virginia, the process of training and certification would likely require significant travel and time expense that is not reimbursed by the waivers. Consumer directed options within the waivers already have monitoring requirements provided by waiver management facilitators. Health agencies are not necessary or required for monitoring.

As currently structured, services cannot be split. A move to agency supervision for parents would, I believe, essentially require that all other attendants and respite care providers be agency. A requirement that attendants and respite care providers be agency would likely bring chaos to families depending on attendant and respite care. There is no guarantee that the child currently receiving services would be accepted by an agency. There is little evidence that agency provided care is more reliable and dependable (and some good reasons to believe that it would not be), and as stated earlier, there are many families in Virginia who do not have convenient access to agencies who could or would provide this.

Concerns that “legally responsible individuals” may be providing services for compensation that they should provide out of legal obligation as responsible are, frankly, insulting, and a failure to recognize or understand the nature of consumer directed care. In this care model, it is not these “legally responsible individuals” who determine eligibility or level of care, and eligibility and level of care determinations are already influenced by assessment of the level of care provided by “legally responsible individuals”.

Restrictions on the hours that can be provided by “legally responsible individuals” to 40 hours also fail to recognize or understand the nature of consumer directed care. They have no basis in other parts of the code. There is no legal basis I am aware of, in this context, for the distinction between these “legally responsible individuals” and others who work as attendants or respite care providers. If a child with a disability could be cared for at home, and this care included paying a “legally responsible individual” an authorized more than 40 hours a week if others attendants cannot be found, then this is successful consumer directed care, not a failure, as this an individual who is able to remain with a family, and in a community, which is the one of the main points of consumer directed care. If this individual requires that level of care, cannot find adequate outside attendants to provide it, and ends up in agency care, outside of the home, and outside of the community, how is this a preferable outcome?

In our system of law, we are presumed to be innocent until proven guilty. The language in these changes seems to imply that “legally responsible individuals” are committing a kind of fraud if they are paid as attendants. In this case, fraud should be something like a reporting of time not worked and is already recognized as fraud. If there is a problem with a waiver service facilitator not properly monitoring or submitting authorization requests for monitoring visits that have not been made, that is a separate real fraud problem, and a problem which you could have also with agency monitoring.

In the time that my daughter has had a waiver, the attendant and respite care provided has made it possible for to work, part­-time, only because I have a flexible employer, who can deal with my having to rearrange my work schedule because attendants are late, do not show up, etc. Before you decide to make changes that could have detrimental impacts for many individuals and families in Virginia, I encourage you to spend time with the families who are treading water as it is.