My daughter has been severely disabled since birth in 2000. Since she's been an adult my wife has been her paid caregiver and I'm the EOR. Historically, we've hired a full-time caregiver during the summer and relied on some respite caregivers during the year. For several years before she turned 18 it was difficult to hire anyone to work during the summer. It became impossible by 2018. Advertisements produced a few inquiries, a handful of interviews, and no one accepting the job when we tried to hire them. It was a relief when she turned 18 and it became possible for my wife to be her paid caregiver. This greatly reduced the stress of trying to hire some and our schedule immediately became more flexible as we could do activities with our daughter when she was able to without having to fit that into a fixed schedule of an external caregive. These proposed changes would upend all of that. It's very likely we'd be unable to find anyone. Health care is short staffed everywhere right now and that's unlikely to improve any time soon given the aging population. Family members typically have already been taking care of the person for years - in many cases their entire lives. We know what their needs are better than everyone. Our daughter sees multiple specialists multiple times of the year. We have long conversations with each of their doctors and doctor's staff throughout the year. That's already a lot of oversight. Having access to a nurse oversight as described in this proposal might be nice, but in our experience medical staff can help answer general questions but are typically not that useful for our daughter's specific day-to-day needs. If an access to a nurse is useful, it's equally useful to families hiring from the community as it is to families using a parent or spouse. It should not be a requirement that the employee come from a service in order to receive that benefit.

Having a paid caregiver come into a home is an EXTREMELY intrusive act. It obviously is useful in many cases, but if there is an alternative for a family member to be the paid caregiver then that is more flexible and obviously less intrusive and it can reduce stress to the entire family (which often includes other family members in addition to the paid caregiver and the person getting the care). That benefits everyone involved.

In addition,I think the rational for denying respite care when there has been a demonstration that there is no external person or service available or appropriate is not correct. There are different requirements for a full time caregiver versus a respite caregiver. In our experience, it is possible to find someone available for respite care - a weekend, for example, an evening or day out from time to time - when that same person can not provide full time care. Because a full time hire can not be found does not mean that someone external can't be found to provide respite care.

Finally, the job market is very tight right now and the pay rate for attendants can not compete for most jobs. Health care itself is also very short staffed and that's unlikely to change any time soon. Eliminating people willing and able to provide the paid services that these family members are entitled to only makes that problem worse - with no benefits to the families involved. We already receiver regular oversight from the multiple specialists our daughter sees and from the oversight we get from the MCO and from our services facilitator.