May 20, 2005 Meeting

The third video-conference meeting of the Disability Services Advisory Committee was held on May 20, 2005. The meeting was co-chaired by Ann Ford and Art Dykstra.

The draft summary of the last DSAC meeting was accepted without comment.

Major Process Issues

It was reiterated that DSAC members had two opportunities to provide additional input and comments to the material discussed at the DSAC meetings. The first is to email or mail written comments to Greg Diephouse. The second is to inform Greg Diephouse that you are interested in discussing any issue in more detail. This was specifically the case with DSAC members who would like to discuss the Action Step Matrix in more detail. A separate conference call can be set up if people are interested in such a discussion. Again, they should let Greg know by email or voicemail.

It was clarified that the DSAC would strive to achieve general consensus on all major points of discussion. Absent such a general consensus the co-chairs would ask for a voice vote on any issue where consensus was not reached. A simple majority would be needed to carry any point. All unresolved issues or unsupported positions would be documented at the meeting and referenced in the DSAC Project Report that is to be submitted along with the Implementation Plan.

The Project Outcome for July 1, 2005 was described. The DSAC work product will have two components. The first will be a Project Report that outlines the composition, leadership, meeting schedule and discussions of the DSAC. This Project Report will also include a brief presentation of any major issues or positions that were discussed but not included in the Implementation Plan. The second work product will be the Implementation Plan. It will be a presentation of the strategic imperative and policy directions under discussion as well as the recommendations and action steps. The co-chairs also introduced the addition of major systems change outcomes that would provide concrete performance expectations that would provide a framework for the action steps. The Implementation Plan would be the blueprint for the next five years. The state agencies involved in DSAC would then, with the advice of the DSAC, translate the Implementation Plan into a year-by-year work plan that would guide related activities.

It was agreed that two more meetings would be held in June - on the 2nd from 2-4 PM and on the 16th from 1-3 PM. Both meetings would be video-conferences similar to the previous meetings. It was also recommended that, after July 1st, the DSAC would meet quarterly to monitor and provide guidance for the implementation of the plan.

DHS informed the DSAC that the Administration was developing a proposal for the new "Real Choice: Systems Change Grant funding available at the federal level. The co-chairs agreed that it would be best if this proposal was built off work done by the DSAC among other existent groups. This proposal was to be discussed at a follow-up conference call with the state agencies and DSAC co-chairs participating. The proposal would have to be submitted by July 7, 2005.

Major Policy Directions and Recommendations

Some concern was raised that the major policy directions and recommendations were too "Mom and apple pie" and that the DSAC needed to generate more concrete changes so that at the end of the Implementation Plan the changes would be readily identified. This was tabled to the discussion of the "Primary Person-based Outcomes for Change" later in the meeting.

Concern was raised about the emphasis on community and whether or not there was too much emphasis on this issue. After considerable discussion a general consensus was reached that the current focus on consensus was appropriate, especially since the purpose of the Implementation Plan was to make significant change. It was also noted that emphasizing the community did not eliminate any person's ability and opportunity to choose institutional care - only that it made it clear that the State should "level the playing field" on this issue. This will be noted in the Project Report.

A strong recommendation was made that the Implementation Plan should include a heightened emphasis on monitoring the health, safety and progress of people who choose to leave institutional care. There was concern that anecdotal information suggested skill diminishment in a less restrictive treatment environment. Others felt that all people should have the same level of focus on this issue - that those "deferred" from institutional care should be monitored at the same level. It was generally agreed that the Implementation Plan would be revised to include a focus on this level of monitoring and that the cohort of people who choose to leave an institution would be highlighted as a group, even though all would receive the same level of monitoring.

Multiple recommendations were made to include more language committing the Administration to adequately fund the included recommendations. Recognizing the fiscal constraints of the current budget should not keep DSAC from emphasizing that the needed changes require some level of increased financing - in addition to the previously discussed administrative streamlining changes.

It was generally agreed, at the suggestion of the co-chairs, that the recommendations and action steps need to indicate which of the following resource categories is appropriate:

  1. No additional resources are needed, action can be achieved with current resources as configured
  2. No additional resources are needed, action requires reallocation or redirection of existing resources
  3. Additional resources are needed, either from GRF or other sources

Primary Person-based Outcomes for Change

It was agreed that the Implementation Plan would benefit from a list of concrete outcomes that would reflect changes in the lives of people who have a disability and elders. A short brainstorming session identified the following areas to be considered:

Person-centered Outcomes

  • People with a disability and elders should be able to make choices that are supported by flexible funding mechanisms that allow people to select the support or service of their choice and, if that includes moving from an institution to the community, have their available funding available for services in the community. This issue needs more clarity as some were concerned that it not be a dollar-for-dollar (especially if all current funding wasn't needed in the community). There was also concern that this benefit to the person with a disability or elder should not inappropriately undermine a provider's fiscal stability.
  • Each person with a disability or elder should have the same opportunity to access needed supports and services as every other person - the playing field should be level.
  • People can access the supports or services that they need and choose in their own community; that they need not move to a new community - especially those people living in rural areas.
  • Qualified family members who choose to support their loved ones at home rather than take employment outside the home should be able to earn a fair wage as a care giver.
  • People now living in a home with 9 other people should have the option to live in a home with 3 other people.
  • People who wish to get married should be able to have a place to live that allows them adequate privacy and the opportunity to create a home.
  • People should have the control over decision-making - it shouldn't be about the bureaucracy having the control - and access to needed supports and services should be timely - from the person's point of view, not from a bureaucrat's point of view.
  • People should have accessible and affordable housing.
  • People with a disability and elders should be able to access generic (general community services) rather than have to receive specialized services - the general health care community should be capable of responding to their needs.
  • Each person should have a voice in deciding what success in the community means to them and the state should monitor accordingly, not just focus on external, professionalized treatment goals.
  • People who have severe behavior issues and community safety problems should have some protections that are commensurate with their disabilities, to help them receive appropriate services rather than summarily end up in the Criminal Justice System.
  • Each person accessing supports or services should have a user-friendly road-map for eligibility, intake, planning, decision-making and access to services.

Systemic Outcomes in Support of Person-centered Outcomes

  • Illinois will have a uniform or integrated Long-Term Care budget that maximizes the leverage of available funding to benefit people with a disability and elders. This uniform or integrated budget will streamline access to services and facilitate timely decisions on service authorization and individual budgets.
  • The Governor will provide public leadership for this system transformation, including meeting with people with a disability and elders as stakeholders in policy-making.
  • The professional and para-professional staff in the SODCs should be available as resources to people who live in the community.
  • The state should have a consolidated HCBS waiver that provides similar supports and services to all people with a disability and elders and which is equitable and is administered with a "no wrong door" approach.
  • Payments for supports and services should be based on real cost data - not arbitrary funding decisions.
  • Case coordination should be the primary, if not only, responsibility of PAS agents, all extra curricular responsibilities should be transferred to other staff to let them concentrate on case coordination and helping the people with a disability and elders.
  • The state should critically analyze its existing policies to see which ones unnecessarily disadvantage people with a disability and elders (especially if it is not required by federal law or regulation).

Next Steps

The next meeting will be held on June 2nd from 2-4 PM. The primary focus will be to finalize the list of outcomes and system change initiatives that are to be included in the Implementation Plan.