The waiting list in Ohio for Home and Community Based Services Waivers for people with developmental disabilities is complicated, confusing, and creates struggles for individuals served, their families, and advocates. It is not uniformly understood, nor administered objectively, according to many individuals served and their families.  (All good reason to “Fix the List”) There are currently just under 50,000 people with developmental disabilities on the waiting list in Ohio, with a median wait of 9.3 years for an I/O Waiver.  Those numbers are a bit escalated, as almost half of this number represents people who either:

  1. Already receive some level of services which are funded by their county
  2. Express no current unmet need, but are on the list in anticipation of a future need and long wait to receive a waiver.

There are people on the list who have an acute need. For some of these individuals, they are behind someone who may not have any unmet needs currently.  In order to expedite waivers getting to those individuals who most need them,  Fix The List, a coalition of family members, provider agencies, and county boards of DD has come together. This collaboration aims to develop a functional waiting list for HCBS Waiver Services in Ohio.  The coalition meets monthly to work on the issue, and in just over a year, has a proposed rule as well as an assessment tool.

The Rule

As of 2/14/18, Fix The List has generated. 5123-9-04: Home and community –based waivers waiting list. Read entire proposed rule here.  The rule defines “immediate need” as a situation that creates a substantial risk of harm to an individual if immediate action is not taken. These could be the loss of a caregiver, the imminent discharge from a facility or other change in housing, or as a direct result of the individual’s behavioral concerns or health needs.  It offers expectations for the role of the County Boards of DD in their administration of the assessment as well as annual auditing of their own individuals on the waiting list.  Considerations for meeting the needs of individuals with locally funded waivers, as well as the removal of individuals who no longer qualify from the waiting list is also discussed. It also discusses specific responsibilities of the County Boards of DD as well as the Ohio Department of DD.  Due process following the denial, reduction, suspension, or termination of a service is covered as well.

The Assessment Tool

The Assessment Tool asks specific questions to better understand an individual’s difficulties as well as any changes in condition or situation that need to be considered.

Here are several examples of items on the assessment:

  • Does the person have behavioral, physical care, and/or medical needs that create substantial risk of harm to self/others?
  • ​Does the person have an ongoing need for limited/intermittent supports to address behavioral, physical, or medical needs in order to sustain existing caregivers and remain in the current living environment with existing supports?
  • Is the person facing substantial risk of harm due to potential loss or declining condition of existing caregiver(s)?
  • Will the immediate or current unmet need require enrollment in a waiver due to the lack of alternative resources to address the need?
  • Does the person require waiver funding for adult day or employment-related supports?

The tool differentiates between individuals with unmet immediate needs (the highest level of need/risk), unmet current needs, or neither. It considers an array of factors, including:

  • Individual’s current living arrangements
  • Current services
  • Risk of harm due to change in caregiver or living arrangement.
  • Declining skills
  • Behavioral concerns
  • Physical concerns
  • Medical concerns
  • Experience with Abuse/Neglect/Exploitation
  • Pending discharge from a facility
  • Needed funding for Adult-Day or Employment Supports

It is very prescriptive, in order to mitigate interviewer bias and offer a simpler and more direct evaluation. Supporting documentation is requested to validate certain responses. Worth noting is that the conclusion is not narrative and subjective in nature. Rather, an individual is sorted into one of four categories based on Yes or No responses to specific, critical items.

  1. The individual has unmet needs that require enrollment in a waiver at this time to address circumstances presenting an immediate risk of harm.
  2. The individual has needs that are likely to require waiver-funded supports within the next 12 months and will be placed on the waiting list at this time.
  3. The individual does not require waiver enrollment or placement on the waiting list as alternative resources are available to meet assessed needs.

or

  1. The individual is not eligible for waiver enrollment or placement on the waiting list, as he/she has no qualifying condition.

The Fix The List Coalition has made great strides to define and simplify the process for administering HCBS waivers to individuals in need.