LIFE CHOICES PROJECT MEETING
Illinois Education Association Professional Development Center
3440 Liberty Drive ~ Springfield
November 12, 2014 ~ 10:00 am
Division of Developmental Disabilities’ Five Outcome Statements:
Individuals served with Intellectual Disabilities will be healthy and safe;
Individuals served will have real relationships with family and friends;
Individuals who want to work will have paying jobs;
Individuals will make decisions about their lives; and
Individuals will have opportunities to contribute to their communities
Vision Statement: All children and adults with developmental disabilities living in Illinois receive high quality services guided by a Person-Centered Plan that maximizes individual choice and flexibility in the most integrated setting possible. All areas of the State have available a full array of services that meet the needs of children and adults with developmental disabilities living in their local communities regardless of intensity or severity of need. There is no waiting list for services.
Following is a summary of the major items discussed during the meeting:
The objective of the meeting was to receive updates from Life Choices Project work teams, demonstrate how the various team recommendations fit together, share recommendations being worked on for implementation, and receive a preview of the next important steps.
AGENDA ITEMS
- Opening Remarks and Overview of Life Choices Progress since February and feedback on the project
Mary Lou Bourne and Greg Fenton welcomed the group and thanked everyone for coming and for their many contibutions to the Life Choices Project Greg noted that the Division has been both humbled and energized by the level of commitment on the part of ISC agencies, service providers, DD staff, self-advocates and family members. Special recognition was extended to familiy members. Mary Lou noted that regardless of whether family members have jobs in this field, their contributions really went above and beyond. Family members present for the meting were given a round of applause
Mary Lou then provided an overview of activities and events that transpired since the February 19th meeting, including a summary of the processes that culminated in the formation of work teams, the scheduling of meetings, and group concurrence with team recommendations.
- Interactive Updates from Work Teams: activities and recommendations
§ Work Team 1 - Service Coordination Enhancement
► Team members were acknowledged. The Work Team consisted of many ISC members, a family member, and DD members. The Team met several times, and yielded good participation for the most part.
► The three tasks that were assigned to Work Team 1 were:
► Identify what competencies, knowledge and training might be needed to perform service coordination;
► Identify changes needed in the structure and business processes that would support the Team’s work; and
► Identify a set of performance measures to use in ascertaining the effectiveness of the Team’s work.
► The workgroup’s tasks were divided once they came up with their list of recommendations. They found some consistency in the themes of their recommendations, and following are their 6 themes:
o Recommendation to clarify the Work Team’s responsibilities;
o Recommendation to clarify what the ISC role is in monitoring, particularly with provider agencies;
o Recommendation for data collection and reporting;
o Recommendations related to improvement in Person-Centered Planning;
o Recommendation for training expectations; and
o Recommendation for development of a full array of services in the whole system – not just the ISC role, but how the ISC role fits into the services and processes being offered throughout the State.
► Discussed slides of the Teams’ recommendations (which have been posted on the DHS website).
► Comment/Question and Answer Period (Q & A) – Following the presentation, there were a number of comments, questions and responses, including the following:
Comment: A participant requested to peruse the recommendation handouts and documents, and was informed that all recommendations were available on the DHS website.
Comment: One participant expressed her approval for what the Team had done, and would like providers included in the recommendations related to monitoring.
Question (Q). A question was raised regarding the decision to move to 6 (monitoring) visits per year?
Answer (A). The Team didn’t determine exactly how many visits would be appropriate, they felt that 6 would be the minimum, as they felt 4 would not be enough. The Team is suggesting a process in which, with State approval, the ISC could conduct more visits if s/he felt there was a need to do that.
§ Work Team 2 - Intake and Eligibility
► Heather Houser described the purpose of Team 2, which she explained was to develop strategies to help individuals and families better navigate the system. The Team looked at making intake and eligibility two completely separate tasks. They felt that the Intake role should be short, quick and to the point, while the Eligibility role would take a little more time.
► The members of Team 2 who were present were acknowledged. Heather indicated that they had a fairly good-sized Team. For the meetings that were held, they traveled all over and met via conference calls as well. Attendance was pretty good most of the time. Heather noted that the Team did not have a Chairperson; Mary McGlauchlen was the Communicator; and Mary Lou Bourne was the Team’s Facilitator.
► Heather spoke about the specific tasks assigned to Team 2, which were:
1) Describe a process for support coordinators to use when describing supports available so that first contact discussion with families can be made as consistently as possible;
2) Describe a new model to identify supports needed requested by family;
3) Steps to carry out the timely identification of DD eligibility, which includes families and advocates;
4) Consistency included in determining eligibility;
5) Training system-wide for everyone, not just ISSAs;
6) Standard criteria set for eligibility;
7) Consider combining work;
8) Create a central database that shares all common general information.
► Discussed slides of the Teams’ recommendations (which have been posted on the DHS website).
► Comment, Question and Answer Period (Q & A) - Following the presentation, there were a number of comments, questions and responses, including the following:
Q. Is the Team recommending that ISC agency staff attend the IEP meetings?
A. Didn’t necessarily recommend that they attend the IEP meetings, although that would be good, (Heather expressed this was her own view) the team definitely felt there needs to be involvement from an ISC agency – at least two years prior to their graduation.
Q. Regarding psychological assessment of people who are mild/moderate, a question was raised regarding who would be doing the psychological. Would a clinical psychologist be performing the assessment?
A. Yes.
Q. Do we want HFS to create a streamlined process?
A. Yes, absolutely, we want to streamline the process for Medicaid eligibility because currently it takes too long to get them on Medicaid and get their services started, and that is unacceptable.
Q. Regarding transition planning for students prior to graduation, someone asked whether the recommendation was for planning 2 years prior to exiting the school system?
A. Yes, whether they’re leaving at age 18 or 22. (Note: the transition planning required by Dept. of Ed must start at 14; this reference was the transition to determine if eligibility for adult DD services exists.)
Q. Regarding the recommendation regarding a state-wide brochure for the ISC agencies, a participant asked whether it would be appropriate to include in that brochure information about intake and eligibility?
A. That’s a great piece for the alignment, thank you for picking up on that.
Comment: You mentioned the Eligibility vs. services that are available to families when meeting with them for the first time, some description of services available is going to be the most valuable thing they walk away with from that meeting.
A. Our thought was that, during intake and eligibility, when you’re talking about the individuals’ needs, it’s going to fit in somewhere with what they need, we just don’t want to basically say “these are the services, which one do you want”. This is a recommendation that came from a family member on our Work Team.
General Comments and Concerns
· Families who are on the PUNS think they are going to get that. They are waiting a long time, instead of advocating and pursuing alternate doors for other options that could possibly meet their needs. One example is of a family that was on the waiting list for 6 years, and then told they were not eligible.
· Another important piece is the education and training of what services are available. A lot of parents aren’t going to be able to articulate what services they need because they don’t know what the array of services are. Someone noted that they’d hate to see the ISCs choose what they think fits the family; instead, the family should have the full array and work with the Coordinator.
· In terms of families, one of the reasons why this is so important to families is because when families come into an ISC agency, they may be the guardian, and they do not need to be bombarded with what services are available. They need to look at the individual that they are representing so that the individual can be included in the process. It is really important in this role that guardians allow the person to participate in the process. Getting to know that individual is the first step.
· It was noted that there is a book out from the University of Chicago titled Nudge, about behavioral economics, which talks about choice architects – so if you put on your intake, eligibility and service determination hat when reading this book, it makes the case very strongly of why not to put specific services into people’s minds at the front end. The book was highly recommended, and reportedly easy to read.
§ Work Team 3 - PUNS and Medicaid Enrollment
► Jane Nesbitt, Team 3’s Chairperson, described the purpose of Team 3, which she explained was to develop an action plan to respond to feedback received from the PUNS Listening Tours. Tasks completed were:
1) To convene 4 meetings - 3 in person and 1 on a conference call;
2) Made 32 recommendations with 100% consensus from all Team members;
3) Placed Team recommendations into 4 quadrants – and their placements continue to be adjusted (these will be online soon).
► Jane reported that Team 3 consisted of 15 members total. Celia Feinstein was the Team’s Facilitator; Jane was the Team’s Chairperson; Michelle Tibbs from Western Illinois Service Coordination was the Team’s Communicator; DHS Liaison was Reta Hoskin. One family member, who also works for the Family Support Network, was a member, and there was representation from 3 Provider agencies and 9 ISC agencies. The Team’s Subject Matter Expert (SME) was Celia Feinstein, and the DHS-DDD Representative was Reta. Many committee members were present for today’s meeting and were acknowledged.
► Jane explained the 32 recommendations that were made. The Team’s recommendations fell into 6 categories:
· 6 recommendations in PUNS Outreach and Education;
· 6 recommendations in PUNS Completion;
· 6 recommendations in PUNS Updates;
· 6 recommendations in PUNS Closing;
· 6 recommendations in PUNS Instrument Revision; and
· 2 recommendations in PUNS Training.
► Jane discussed the slides of the Teams’ Recommendations (which have been posted on the DHS website).
► Jane reported on the Teams’ next steps, which are:
1) Team is committed to additional and ongoing subcommittee work it will take to ensure recommendations become a reality and contribute to real change;
2) Team is committed to PUNS being more than a waiting list and a method to enroll individuals onto a waiting list;
3) Team is committed to making PUNS outreach and education, PUNS completion, PUNS updates, PUNS closings, PUNS instrument revision and PUNS training to be meaningful and with consistent methodology so that it remains important and individuals’ needs can’t and won’t be ignored;
4) Team believes that the 20,000 individuals identified - and the 20, 30, or 40 thousand more people who have yet to be identified - need more access to the knowledge that the ISC agencies can provide, if given the means. Schools can provide, if given the means. Communities can provide, if given the means – when we all work together.
► Comment/Question and Answer Period (Q & A) - Following the presentation, there were a number of comments, questions and responses, including the following:
Q. For the annual updates that don’t require face-to-face contacts, how are families going to attest that they were offered a face-to-face contact on the actual PUNS when it has been done via telephone?
A. We will be sending them copies of what we did over the phone, and they will sign and return them. That doesn’t mean we will get 100% compliance. We will at least be able to substantiate the fact that we sent it to them.
Q. Why wasn’t just ICF-DD Ligas included in the list of express PUNS?
A. There are some individuals with Ligas who may be added to the express PUNS.
Q: Regarding communication and the process for closing out PUNS - Communication is critical. You’re going to send out letters, and you may get xx amount back – I did not hear what the process is to ensure that there is competence in the cultures that you’re reaching out to in order to make sure that families understand what PUNS is, what it means. You can have all this stuff written, but if it’s not in a language that is clear and family-friendly, you will not get a response back.
A: Hopefully we did touch on all of those concerns in some form in our recommendations. We know it’s hard work and we know that each ISC agency works and deals in different communities with different groups, and we believe that there isn’t an ISC agency that isn’t out there making a good best effort, and we want that to continue.
Mary Lou pointed out that the 4th bullet down specifically points out that the ISC agencies need to have outreach that is specifically geared toward an encompassing cultural diversity beyond a certain minority, and that the initial letter sent out includes a statement in multiple languages that indicates if you don’t understand this, here’s how to get in touch with us to have it in a different language.