Life Choices Project Year 2014 and Beyond Greg Fenton DDD January 7, 2015

Significant Events During 2014 February 19 th - Large Group meeting was held involving Independent Support Coordination (ISC) Agencies, Service Providers, and DD Staff to discuss the Life Choice Project (LCP) expectations and to formulate Work Teams. February 19 th through November 12 th - Work Teams held meetings to discuss and formulate recommendations in response to the issues, concerns and focus areas with which they were tasked. Most Work Teams held at least four meetings to reach a consensus position on key issues and team recommendations. Wednesday, August 27 th - representatives from Team 1, ISC Role Enhancement; Team 2, Intake and Eligibility; and Team 4, Personal Profile/Provider Selection attended a Steering Committee meeting and made formal presentations of their recommendations to the LCP Steering Committee. October 18 th - DD began posting team recommendations on the DHS website. October 22 nd – representatives from Team 3, PUNS and Medicaid Enrollment and Team 5, Service Monitoring and Collaboration for Quality attended a Steering Committee meeting and made formal presentations of their recommendations to the LCP Steering Committee. Also, DD conveyed its commitment to implement as many recommendations as quickly as possible. Prioritization of the recommendations was initiated, beginning with an assessment of recommendations that will likely have the highest impact on people’s lives, while requiring only readily available resources to implement. October 23 rd – Teams 1, 2 and 4 high impact/high do-ability recommendations are either assigned to internal (DD) staff or returned to Work Teams for additional work or action plans. November 12 th - LCP Update meeting was held. Each work team was given an opportunity to make a PowerPoint presentation on team recommendations. Meeting Facilitators discussed how the various teams’ recommendations fit together. December 19 th - Work Team PowerPoint Slides from the 11/12/14 meeting were posted on the DHS website.

Team 1: Service Coordination Enhancement Recommendations Team 1 Prioritized Recommendations 1(a) – DHS/DDD formally adopt the name of Independent Service Coordination agencies and discontinue the reference to PAS/ISC/ISSA agencies. Formal references to staff of the agencies should be Independent Service Coordinators. (note, this does not mean agency job descriptions must change, but all Division of DD references in formal documents) 1(c) – Create and formally adopt one ISC manual. 2(b) – Anytime policy or procedural changes are developed and/or changes made, a formal process is used for vetting, with clear and concise expectations, and posted in one location. 2(d) – ISC Summary – BQM recommendations and findings for individual agencies be documented in written form and sent to the local ISC agency; a non- identifying summary of the most frequent recommendations and findings related to ISC agencies, be distributed to all ISC’s for improvement initiatives. 6(c) – Develop clear guidelines and criteria for decision making when the DD Division closes a DDD funded residential setting, including clear descriptions of the expectations for ISC involvement and the receiving service providers.

Team 2: Intake and DD Eligibility Recommendations Team 2 Prioritized Recommendations I.1 - Development of a handout to educate individuals and their representatives about both the intake and the eligibility process, to ensure that consistent information is received by everyone across the state. Include the use of a flow chart to the describe both intake and eligibility and also include a definition page and acronym explanation, written in language that is understandable to the individuals and their families. I.2 - Develop a standard intake and referral form for all ISC agencies to utilize. At the end of the form, include a statement indicating a recommendation for further eligibility determination continue, or no further eligibility determination is recommended and the basis for that recommendation, including the appropriate external agency to whom the person is referred. I.4 - Natural supports should be identified and emphasized during Intake. Services should not be discussed at intake, but should be discussed after eligibility has been determined. I.5 - Develop an outreach plan to educate families about PAS agencies, their roles and how to contact. I.6 - Each ISC agency receive funding dedicated to the transition of students from school age to adult services, beginning at minimum, within school year which begins two years prior to graduation. E.2 - If not eligible for DD Services, then information on alternative services available within the local community must be discussed and provided to each family or person who has applied. E.3 - Extend the allowable time since the physical/medical exam was completed from the current requirement of 30 days to physical/medical exam completed within one year of the eligibility application date. For those people requesting a Skilled Nursing Facility, the requirement for the physical exam would be within 30 days of the eligibility determination.

Team 2: Intake and DD Eligibility Recommendations Cont. E.4 - Change the timeframe for Psychological assessments from the current requirement to the following: a. Any Psychological evaluation completed for a person with Severe or Profound Intellectual Disabilities will be accepted, regardless of timeframe, and b. For people with Mild or Moderate Intellectual Disabilities a Psychological evaluation completed within the past 5 years will be accepted. c. For those with no apparent Intellectual Disability, but are referred based on a related condition, the Psychological Evaluation must have been completed within the past 5 years and signed by a licensed psychologist and/or other appropriate professional (neurologist, Psychiatrist) depending on the related condition. E.6 - Develop a Developmental Disability Eligibility process and procedure, and include a requirement that any evaluation instrument or assessment instrument used by Psychologist is meaningful and useful. (recommend removing the list of instruments currently named in the PAS Manual) E.9 - (Done) - Eligibility determination does not need to be repeated for any adult who is changing service funding from one HCBS Waiver program to another, or from an ICF/DD to an HCBS Waiver program. E.11 - Carry out a full analysis of the current number and cost of Psychological Evaluations completed, and the impact these changes will have. Particular attention to be paid to the impact of available Psychologists to perform the evaluations and the cost of the evaluations. (team 6). E.12 - No single instrument, document or contribution is the sole determiner of eligibility /presence of a Developmental Disability; many situations will have a variety of documents used to identify the presence or absence of a Developmental Disability. Therefore, a form should be developed indicating a list of acceptable documentation including instruments or assessments and the appropriate professional expertise needed to complete them, for the different diagnoses, (similar to an I-9 employment verification is completed) - you MUST have one from column A and two or more from column B. Column A would be diagnostic.

Team 3: PUNS and Waiver Enrollment Team Recommendations Team 3 Prioritized Recommendations INITIAL PUNS COMPLETION -All initial PUNS should be completed face-to-face at the location of the individual/family’s choosing. INITIAL PUNS COMPLETION -Include a standard statement on all forms/letters related to PUNS, “if your address or phone number changes, please let us know.” INITIAL PUNS COMPLETION -Require all PUNS to be signed by individual and/or guardian except for Express PUNS. (Exception-closing PUNS due to being unable to locate individual/guardian.) INITIAL PUNS COMPLETION -Encourage people to apply for Medicaid during transition planning. INITIAL PUNS COMPLETION -Encourage people to apply for SSI once they turn 18. PUNS UPDATES -ISC should take primary responsibility for PUNS updates, but this should be a shared responsibility with the family. PUNS UPDATES -Revise the language in the annual update letter from DHS to be simple, straightforward language. Add a sentence in several foreign languages (Spanish, Polish, etc.) near the bottom of the letter stating if you need interpreter services or the letter in a different language, check the box and mail it to your ISC agency. PUNS UPDATES -Within the update letter, state the number of people who received services last year in order to show that PUNS matters.

Team 3: PUNS and Waiver Enrollment Recommendations Cont. PUNS UPDATES -Revise the PUNS tool to contain a statement with a check box for the individual/guardian to sign stating a face-to-face meeting was offered (including alternative locations), but they chose to complete the PUNS by telephone, mail, , or fax. CLOSING PUNS- DHS should send the PUNS update letter 90 days prior to due date. CLOSING PUNS- ISC complete 1 st phone call or text 60 days prior to PUNS update due date. CLOSING PUNS- If there is no response and an update session is not scheduled, ISC complete 2 nd phone call or text 1-2 weeks following 1 st phone call, varying day and time of call. CLOSING PUNS- If there is no response, ISC completes 2 nd letter or two weeks after the previous letter stating case will be closed if there is no response in 30 days. CLOSING PUNS- If there is still no response or plan for updating, ISC completes 1 st letter or 45 days prior to PUNS update due date stating that the person’s record will be closed if there is no response within 30 days. CLOSING PUNS- If there is no response, after 2 weeks of 2 nd letter, ISC will close the PUNS. PUNS INSTRUMENT REVISIONS-( A SUBCOMMITTEE TASK)-Revise the PUNS tool to contain a statement as to whether the individual participated in the PUNS meeting; if not why not. PUNS OUTREACH- this should be a subcommittee task-Encourage people to apply for Medicaid during transition planning. PUNS OUTREACH- this should be a subcommittee task-Encourage people to apply for SSI once they turn 18.

Team 4: Individual Profile Development and Provider Selection Recommendations Team 4 Prioritized Recommendations: #3 – Plan Review & Approval - The team recommends to simplify the plan approval and rate approval process and responsibilities. The anticipated changes in the eligibility determination process should prompt a crosswalk of overlapping and redundant practices related to the plan. Use of technology can eliminate paper processes that are inefficient and unreliable. #5 – Provider Selection – The team recommends that the NASDDDS outreach project tools that can assist families in selecting providers be submitted to Team 4 for review and comment.

Team 5: Monitoring and Quality Recommendations Develop ISC performance indicators that focus on measurable quality outcomes of ISC services/supports rather than validation of services completed. Adopt proposed Performance Indicators. Standardize forms across all 18 PAS agencies and enable writable via PC and accessible on DHS website. Provide uniform training for alll stakeholders - PAS/ISSA, providers, families, regional facilitators and DCFS/DHS reviewers. o New Individual Visit and Interview Notes to be phased in as a pilot project to be revised after a trial period. o Announce date of implementation of new recommendations, distribute documents and offer multiple mandatory trainings across the state over several months. Measure responsiveness to families. Conduct sample satisfaction interviews and surveys as proposed. Attachment A. Create a provide a visual "flowchart" of the Illinois Service Delivery System for DD/ID o ISCs to share/review with families as a Resource Guide o Outline steps to access system and the general PUNS process o Review with families annually, discuss their current "position" in the system and next steps moving forward o Incorporate a guide that identifies each Team Member's roles - ISC, ISSA, Provider, Parent/Guardian Use a document separate from the Individual Visit and Interview Notes for "additional monitoring". Review if necessary and implement consistently across all 18 PAS agencies.

Team 5: Monitoring and Quality Recommendations Cont. Measure the length of time from date individual is determined eligible to the date services begin. Defined as the first billable day/hour with chosen provider. Revise and standardize ISC Individual Visit and Interview Notes and interpretative guidelines to solicit meaningful feedback as proposed. Attachment B. Identify system/process, resources and training for soliciting input from individuals who require alternative communication methods. Attachment C. Develop a central data reporting/management system that is accessible to multiple users. Establish competencies for Service Coordination staff, enhanced QIDP training and continuing education. Enhance/develop continuing education for greater understanding of ISC roles to all stakeholders. Refer to flowchart of delivery system. Require training on person centered planning to be consistent for all stakeholders - PAS/ISSA, Providers, families, guardians, individuals. Division to share survey results with ISC including providers specific and general concerns. Define the process and feedback for how Division will respond to technical assistance referrals from ISC. Define what the Satisfaction Survey is to be used for and emphasize that it is NOT to be used for. It is not designed to be used punitively towards any stakeholder. Communicate a clear definition of the "TEAM" - Interdisciplinary Team, Support Team. The final say should be driven by families not professionals. Develop a standardized process to address people who are satisfied. Conflict Resolution should be changed to Resolution of Issues and/or Concerns to demonstrate collaboration.

Next Steps: Move forward with High Impact/Very Do-able recommendations, including those that will have relevancy regardless of the path that is pursued by the incoming administration Develop a phase-in strategy and schedule for Low Impact/Very Do-able recommendations for training Identify what is needed to implement High Impact/”Will Take More Time” recommendations and move forward with a plan for longer-term implementation steps Team 6 will make a formal presentation to the Steering Committee on January 15 th on how to support the team recommendations. Additionally, the Steering Committee will review all of the Team recommendations to determine:  which ones have Committee concurrence  which ones will be assigned to internal (DD) staff  which ones will be returned to work teams for additional work  and which ones will be deferred because they require further discussion, research and support prior to a final decision regarding implementation

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