Before we were aware of the COVID inspired option to have me paid to care for my son and give my wife relief as his primary care giver, we went through numerous other support options. None of them could provide the support my son needed and created more challenges and strain in our home than the support they provided was worth. It was a huge relief when I was able to focus on supporting my son’s special needs so my wife could focus on more routine details of life. This is why we are very glad to see steps are being taken to extend this option.

However, I am concerned about a few of the restrictions that have been included in this proposal:

1.       Another LRI cannot be the EOR and the person acting as the Employer of Record (EOR) must reside in the individual’s local community within a 50-mile radius.

 We do not have any family that lives nearby. We have a reasonably good support system despite this but will still find it difficult to find someone who is willing and able to take on this role for no compensation. Doubtless there will be many families who will not be able to find someone serve in this capacity. This is likely to disproportionately impact those with the poorest support systems who need this option for care the most. Abuse and fraud seem more likely to arise from desperate people being forced to trust strangers to act as their EOR as it would for another LRI serving in this role.

2.       The legally responsible individual must document all tasks for each shift on DMAS-authorized forms and submit all work shift entries through the fiscal/employer agent’s Electronic Visit Verification method.

Being the LRI for a special needs child is not shift work. It is understandable that hours need to be quantified and perhaps even specified. However, piling on a requirement to log in and out throughout the day and fill out daily paperwork is burdensome. It will take time away from the parent’s care of the child. It will be particularly a barrier to those whose resources (time and financial) are most limited.

3.        Respite is not available when there is a paid legally responsible individual as respite is only for the unpaid primary caregiver.

It seems unnecessarily punitive to deny the respite benefit to someone who is using the LRI paid care benefit. Those who are in the extraordinary circumstances that qualify for the LRI paid care need the respite services the most. In my family’s case I have been the paid LRI but my wife is the Primary Caregiver, she still needs respite. Regardless of that circumstance paid Primary Caregivers need a break just as much as those who are unpaid, having a separate resource of hours to use as needed can be a huge benefit.