I endorse the VAA Comments.

The Regulations should reinstate aging parents on the priority 1 list. Although the priority list was developed by a working group, it is obvious that none of these individuals included anyone on the wait list who was previously on the urgent list. Aging parents should not have to be incapacitated or die before their child has an opportunity to wait for services in Priority 1. These parents were on the front lines of deinstitutionalization and were the first ones to decide that their children were better off at home than in the institutions. It is obviously better for people with DD to be a part of the community, however I have heard from a number of aging parents who don’t know where to turn. One aging gentleman had obvious disabilities himself, his wife is now deceased, and his aging daughter has nowhere to go except possibly to her sister’s home, when he eventually dies. Likewise, if a “transitioning youth” is on the priority 1 list and turns 28 at a time when the General Assembly does not allocate additional waivers, his or her parents will have to wait the rest of their lives for services. 

There is also a need to define the terms: “immediate jeopardy” and “immediate risk” for the Priority 1 list. The category for “immediate risk: should the unavailability of a caregiver. Here is my suggestion:

• “Immediate jeopardy” an urgent threat of harm to self or others.
• “immediate risk” a current risk of harm to self or other due to:
  • the person’s behavior and/or inability to care for self
  • the caretaker inability to provide needed care
  • no caretaker available to provide care (this would also include adults who have aged out of the foster care system, people whose parents are deceased, or individuals who are homeless on the priority 1 list).

The VIDES should clearly state to the client and/or caregiver that it assesses level of functioning IN THE ABSENCE OF SUPPORT. At least one person, who was functioning well on the waiver, was terminated because the support he was being provided raised his level of functioning to the point that he was deemed ineligible for the waiver.

Clients should be informed of their right to all records, including the care plans, VIDES and SIS assessments (these are all healthcare records). Further, they should have a right to contest or appeal decisions made about their care plans, VIDES or SIS.