Three-Year Plan Appendix B: NWD Listening Session Findings Final Report

No Wrong Door System Listening Sessions Findings Final Report

Table of Contents

1. Introduction
   1. Background on the No Wrong Door System
   2. Purpose of the Listening Sessions
2. Listening Session Design
   1. Methodology
   2. Site Selection
   3. Participant Outreach and Recruitment
   4. Participation
   5. Analysis Framework
3. Listening Session Findings
   1. Introduction
   2. Strengths
      1. Community Level Collaboration and Networking
      2. Referrals between Providers
      3. Person-Centered Counseling /Options Counseling
   3. Areas for Improvement
      1. Training and Education
      2. Medicaid Eligibility Determination/Navigation Issues
      3. Suggestions for a Statewide Resource Database
      4. Awareness, Marketing and Outreach for LTSS Options
      5. Collaboration between State Agencies
4. Themes Emerging from Specific Populations and Different Role Categories
   1. Strengths
      1. Independent Service Coordinators
      2. ADRNs and AAAs
   2. Areas for Improvement
      1. Issues with State Agency Websites and 1-800 Numbers
      2. Supporting Independence
      3. Behavioral Health Services
   3. Next Steps
5. Listening Session Report Appendix A- Organizations Present at the Listening Sessions
6. Listening Session Report Appendix B- Response Categories and Frequencies
7. Listening Session Report Appendix C- Response Categories Outside the Scope of the NWD System Listening Sessions
8. Listening Session Report Appendix D- Written Comments and Questions
9. Three-Year Plan Appendix C: Goals, Tasks, Timelines and Responsibilities

Introduction

Background on the No Wrong Door System

Both nationally and in Illinois, long-term services and supports (LTSS) for older adults, people with disabilities, people with behavioral health needs, and people with other chronic conditions, are provided by many organizations, through various programs and applications with different rules and funding streams.

To streamline and improve access to LTSS for all populations, the U.S. Administration for Community Living (ACL), the Centers for Medicare & Medicaid Services (CMS), and the Veterans Health Administration (VHA) developed a shared vision in which every state will have a single, coordinated, statewide No Wrong Door (NWD) System. The NWD System is designed to make it easier for everyone, regardless of a person's age, income level, type of disability, or behavioral health need, to find information about and access LTSS. In Illinois, the NWD System will build upon the progress made by Aging and Disability Resource Networks (ADRNs) and other statewide organizations and networks around the state in order to coordinate across multiple organizations and streamline how people access LTSS.

The NWD System vision calls for many organizations with different areas of expertise and resources to partner and coordinate to raise visibility in the community, make it easier for people to find the answers they need, learn about their options, and connect with the right kind of services. In a highly developed NWD System, every organization in the network might be virtually linked through the use of shared resource directories and secure data sharing networks. Staff across organizations in the network are trained to work according to common policies and protocols and to uphold the same standards.

To further develop and strengthen the NWD System in Illinois, the state received a Planning Grant from ACL. As part of this grant, Illinois must include a detailed work plan that it can follow over the next three years to bring together all the different service networks and organizations into a single and coordinated NWD System. This effort is also supported with funding from the Illinois' Balancing Incentive Program.

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Four Functions of a No Wrong Door System

1. Raise awareness about where and how to access services and supports and the availability of home and community-based options
2. Provide person-centered counseling (information about public and private service options and individualized help making decisions)
3. Help people apply for and access public programs
4. Help people access privately funded services

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Purpose of the Listening Sessions

A key part of the NWD planning process is to engage consumers and organizations outside of existing ADRNs, new and potential partners, consumers receiving LTSS and their families to better understand the strengths and existing needs of each NWD System across the state. This ensures the meaningful involvement of consumers, families, and other stakeholders in the design, implementation, and continuous improvement of the NWD System. To support stakeholder engagement in the development of its NWD Three-Year Plan, Illinois contracted with the Lewin Group to conduct listening sessions across the state.

Listening Session Design

Methodology

The listening sessions were designed to collect feedback from a broad range of stakeholders on how consumers and families in Illinois receive information about and access LTSS. Lewin helped the state to facilitate a total of six listening sessions between December 2014 and September 2015.

The first listening session was held in conjunction with the Governor's Conference on Aging in Chicago on December 12, 2014. The session was open to any attendee of the conference and approximately 100 consumers participated. Lewin used a "World Café" style facilitation model with participants moving from one small group to another to discuss different discussion questions. The discussion questions used in the 2014 listening session are as follows:

The NWD Vision

• What are your thoughts regarding the NWD vision and what it could do for the IL ADRN?
• Does it seem realistic?
• Are there elements of the vision that you would modify?
• How can we (Illinois/Lewin) help advance the vision?
• What is IL doing already that fulfills the vision?

Realizing the NWD Vision

• How can we realize the NWD vision?
• What will you or your organization offer to help bring this vision to reality?
• How can we ensure everyone is included (and stays included) in making the vision a reality?

Barriers

• What are some barriers that your organization and/or stakeholder group might face?
• What needs to be done to overcome potential barriers?
• What assistance is needed?
• How can other stakeholders in the room help mitigate these barriers?
• How can your organization/stakeholder group help others overcome barriers they are facing?
• How can efforts to overcome these barriers strengthen the IL ADRN and the NWD vision?

Leaving in Action

• What can you do now to realize the NWD vision?
• What action steps will your organization offer?
• How would you like to stay engaged with other stakeholders?
• What new partnerships could help further the NWD vision?

The themes that emerged from this listening session are presented in aggregate with the summary findings from all six listening sessions later in this report. However, as noted in the findings tables, this session was open to all attendees of the conference and we are not able to identify the different populations each attendee represented.

Between July and September 2015, Lewin facilitated five more listening sessions (four in-person and one virtual meeting) using a similar but updated format. Participants in these later listening sessions were asked to share their insights on current outreach and marketing practices, strengths that exist in the current system of accessing LTSS, identify challenges and discuss ways the system could be improved. Each listening session lasted for 90 minutes and followed the same agenda, displayed in Exhibit 1.

Exhibit 1: 2015 Listening Session Agenda

Agenda Item	Time
Introduction and NWD System Presentation	15 minutes
Small Group Discussion Purpose, Format and Ground Rules	10 minutes
Small Group Discussion Topic 1: Marketing and Outreach Current Practices	10-15 minutes
Small Group Discussion Topic 2: NWD System Strengths	10-15 minutes
Small Group Discussion Topic 3: NWD System Challenges and Areas for Improvement	10-15 minutes
Closing	10 minutes

These later listening sessions followed a quasi-focus group format, with all participants beginning the session together for a presentation from Illinois and Lewin staff and then dividing into breakout groups of 8-14 participants each. Participants were divided into these small groups to facilitate conversation and ensure that everyone would have the opportunity to answer each question. The specific questions that participants were asked to discuss are presented below

Marketing and Outreach Current Practices

• How can Illinois make people more aware of their service options and how to access information and assistance?
• How do people get information about where to go and what type of long term services and supports are available now?
• How are services and supports currently advertised and marketed?
• What kinds of marketing and communication strategies are most effective?
• What could be done to help raise visibility?

NWD System Strengths

• What strengths does Illinois have that should be part of a statewide No Wrong Door System to help people of all ages and with all types of disabilities get information, make decisions about and access long term services and supports?
• What do you think is currently working well, for me, for the people I work with or for all populations?
• What do I or what does my organization already do to help people make decisions and help people apply for or access services?
• What are we already doing really well to help people make decisions and get connected to long term services and supports? In other words, what do we have in place to build on?

NWD System Challenges and Areas for Improvement

• What are some challenges to building a statewide No Wrong Door System in Illinois?

• What is not currently working well for some or all populations? What barriers stand in the way of people trying to access information and assistance?
• What could be done to remove barriers and improve coordination across networks?
• What can I/we/my organization do to help coordinate better across networks?

Site Selection

In consultation with Illinois, Lewin selected three cities in Illinois to host the regional listening sessions:

• Peoria (Peoria Public Library) on July 21, 2015
• Mt. Vernon (Rolland Lewis Community Building) on July 22, 2015
• Chicago (Access Living Center for Independent Living) on August 6, 2015

These cities were selected to ensure geographic diversity in the listening sessions and to allow consumers across the state to be able to attend at least one in-person listening session. The in-person listening session meeting locations were chosen because they offered accessible meeting space in central locations in the community.

In response to high interest in and registration for the in-person listening sessions, Lewin convened one online listening session on September 22, 2015. The format and agenda were identical to the in-person events. Lewin held the event through WebEx, its teleconferencing platform.

Participant Outreach and Recruitment

For each of the identified sites, Lewin developed partnerships with local community-based organizations (e.g., area agencies on aging, centers for independent living) to conduct outreach to potential participants. Lewin and its partner agencies used existing contact lists to reach consumers receiving LTSS, their family members and provider agency staff. State government agencies also posted information about the meetings on state websites and emailed their contact lists to elicit participation across populations.

For the online listening session, Lewin sent emails to more than 300 consumers, including registrants for the in-person listening sessions, its in-person listening session partner agencies, state agency staff workgroups and contacts from Illinois' Nursing Home Deflection Pilot. State government agencies also emailed their contact lists to elicit participation across populations.

Participation

Approximately 490 consumers participated in the listening sessions across all six sessions. Each listening session was well attended, as shown in Exhibit 2. Lewin does not have an exact registration count from the 2014 Listening Session, but facilitators estimate 100 consumers participated in the event.

Exhibit 2:Listening Session Attendance by Location 

Listening Session Location	Date and Time	Number of Attendees
Chicago (at statewide Governor's Conference on Aging)	December 12, 2014	100 (approximate)
Peoria	July 21, 2015 2:30-4:00 PM	54
Mt. Vernon	July 22, 2015 11:00-12:30 PM	62
Chicago	August 6, 2015 12:30-2:00 PM	49
Chicago	August 6, 2015 2:30-4:00 PM	67
Online	September 22, 2015 10:00-11:30 AM	158
Total		490

Consumers across populations participated in the listening sessions. Upon registration for the listening sessions, consumers were asked to indicate the population(s) with which they identify and/or work.

Populations include older adults, consumers with physical disabilities, consumers with intellectual/ developmental disabilities (I/DD) and consumers with behavioral health diagnoses. There was also participation from other key populations including veterans and consumers with traumatic brain injury. Exhibit 3 shows the by-population participation across five 2015 listening sessions.¹

In addition to a broad range of populations, listening session participants were diverse in the roles they play in LTSS. Consumers who receive LTSS, their family members, service provider staff², state agency staff, hospital staff, Managed Care Organization staff, advocates and other consumers involved in LTSS were represented at the listening sessions. Exhibit 4 shows the participation across the listening sessions by role.³

A list of organizations that were represented at the 2015 listening sessions is shown in Appendix A.

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¹ Exhibit 3 includes attendees at the 2015 Listening Sessions. Participants at the 2014 session in Chicago did not provide this information.

² Provider staff includes employees and/or administrators of agencies that provide NWD System functions (e.g.,

information and referral, one-on-one counseling and assistance) as well as employees and/or administrators of organizations that provide direct services (e.g., home health, personal assistance, adult day services ) and health care providers.

³ Exhibit 4 includes attendees at the 2015 Listening Sessions. Participants at the 2014 session in Chicago did not

provide this information.

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Analysis Framework

Lewin developed a tool to record and analyze the comments that participants made during the listening sessions. Facilitators of each small group across each listening session took detailed notes and recorded the first names of the consumers who made each comment at their table. Following the listening sessions, facilitators entered their notes into the tool, with each comment entered in its own row. In addition to entering comments, facilitators also indicated how the person who made the comment introduced themselves to the other participants in their small group. For example, the facilitator noted if the person introduced themselves as someone who receives or provides services and what populations they said they identified with or had experience working with. Participants were also asked to provide this information ahead of time through the registration process for each listening session and the registration information was used to help fill in gaps and serve as a cross-reference for the facilitator's notes.

Lewin's team reviewed all the comments one by one and sorted each comment into groups with comments similar to them to see how often the same or a very similar idea was shared. The team also looked to see which ideas appear to be most important to different groups of stakeholders. Across the six listening sessions, the Lewin team recorded and reviewed 1,137 separate comments and sorted them into 94 response categories (groups of similar ideas). A complete list of the response categories that the comments fell into and the number of consumers who expressed the same or similar comment is presented in Appendix B. The team completed internal quality assurance throughout the analysis process, including interrater reliability tests and peer reviews.

Listening Session Findings

Introduction

This section presents summary findings of major themes that emerged across all participants and within specific populations and roles organized into areas of strength and areas for improvement. We include analysis of both cross-population and cross-role trends as well as frequent themes by participants self- identifying with just one or two populations or roles. There were no significant differences or variation in the types of comments or the frequency of comments made in the different areas of the state, so all findings are presented using data from across all six sessions.

For the purpose of this analysis, we counted as "providers" employees of organizations that provide NWD System function services (e.g., information and referral, one-on-one counseling and assistance) as well as employees of organizations that provide direct services (e.g., home health agencies, personal attendant assistance, adult day services services) and health care providers.

Lewin identified several common ideas that listening session participants representing all populations and roles raised with the high frequency. These are shown in Exhibits 5 and 6 and discussed in greater depth below in Section IIIB.

Exhibit 5: Strengths Identified with High Frequency across All Populations and Roles

Response Categories- Strengths	Comment Frequency
Community Level Collaboration and Networking	56
Referrals between Providers	47
Person-Centered Counseling/Options Counseling	17

Exhibit 6: Areas for Improvement Identified with High Frequency across All Populations and Roles

Response Categories- Areas for Improvement	Comment Frequency
Training and Education	51
Awareness, Marketing and Outreach for LTSS Options4	48
Medicaid Eligibility Determination/Navigation Issues5	42
Collaboration among State Agencies	36
Suggestions for a Statewide Resource Database	36

⁴ Includes multiple response categories related to issues with advertising, marketing and outreach.
⁵ Includes multiple response categories related to issues with Medicaid.

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In addition, Lewin identified themes that were raised frequently by representatives of only one or two populations and/or roles. These are shown in Exhibits 7 and 8 and discussed in greater depth below in Section IIIC.

Exhibit 7: Strengths Identified with High Frequency by Some Populations and Roles

Response Category	Populations and Roles
Independent Service Coordinators	Intellectual/Developmental Disability
Aging and Disability Resource Networks and Area Agencies on Aging	Older Adults Providers
State Agency Staff

Exhibit 8: Areas for Improvement Identified with High Frequency by Some Populations and Roles

Response Category	Populations and Roles
Issues with State Agency Websites and 1-800 Numbers	Older Adults
Supporting Independence	Consumers and Family Members Physical Disabilities
Access to Behavioral Health Services	Behavioral Health

Before the beginning of the small group discussions, participants were asked to focus their comments as much as possible on NWD System core functions. State staff acknowledged that there are many other things going on in the state related to LTSS and many issues of concern to stakeholders, such as the impact of the state budget situation on services, the Balancing Incentive Program, and the development of a Universal Assessment Tool. They asked that these topics be addressed in other meetings and venues and/or that participants submit written comments for review and consideration. However, the small group facilitators recorded all the comments made during the discussions, including comments about issues not directly within the scope of the NWD System. A high-level summary of these comments are presented in Appendix C. In Appendix D is a summary of comments that were submitted by listening session participants in writing during and after the events.

Strengths

Community Level Collaboration and Networking

The most frequently identified strength identified by listening session participants across all populations is the connections between agencies and network capacity at the local level. This was identified as an existing strength by more than 50 individual participants. Among providers, many noted that building personal relationships with staff across service agencies facilitates referring people to and from those organizations. Participants also mentioned meetings, networking events and other in-person networking opportunities as key strategies currently used to connect agencies. In addition, providers of NWD System functions and providers of direct services each discussed connections to one another.

"We developed a collaboration in the Chicago/Rockford area with six other agencies and are working on a website, trying to make it a one stop and bring everyone together."

"Building personal relationships with people in other agencies and helping each other facilitate other ideas and use as a referral system [has been helpful]."

"Community network meetings are good, too. Interagency meetings are phenomenal way to coordinate, help reach people before it's a crisis. For example, one client needed a ramp to help their mom get into a van and the local CIL helped us with that."

Referrals between Providers

Another major strength identified is the capacity of providers to provide and receive appropriate referrals from other agencies. This includes cross-population referrals (e.g., an aging services provider referring an individual to community-based mental health services) as well as referrals between providers of NWD System functions and providers of direct services. 47 consumers mentioned that referrals between agencies work well and help connect people to services.

"We've built rapport and it pays off now. We get a response when we call our partners."

"Providers in the community and their programs/supports are very good at what they do. We feel good about referring to these agencies."

"Referral process works well. We're not just handing a piece of paper, we make sure someone gets access."

Person-Centered Counseling /Options Counseling

17 participants highlighted person-centered counseling and options counseling (PCC/OC) services as an existing strength or a foundation on which to build. People that cited this strength were enthusiastic, emphasizing the importance of PCC/OP in providing comprehensive, high quality personalized assistance to consumers.

"We provide options counseling at our CIL, and it's good because we talk about all the aspects of their lives - not just their challenges."

"We already provide a lot of person-centered counseling and it is an essential service, helps people figure out what direction to go in, really important."

Areas for Improvement

Training and Education

A major theme that emerged from participants, especially providers across all populations and people that identified with the physical disabilities population, is the importance of increasing and improving training and education for staff who work with people with disabilities. More than 50 participants provided comments addressing training and education needs related to LTSS.

In addition, participants mentioned the need to train provider and state agency staff in how to work with anyone needing LTSS rather than one specific population, cultural competency towards disability and how to navigate Medicaid, including eligibility and application systems. Participants also mentioned the need to increase training opportunities for specific services, including personal assistance. Many participants in the 2014 Listening Session in particular noted a general need for training.

"With limited staff and time, there's a lot of throwing new staff into the fire, with no training. "

"Cross-train staff on the different service networks and populations, and have staff "shadow" their counterparts who work in different service networks to better understand their programs and populations."

"Who you get changes the answer to a question. Provide more education on what is available. Families want to help."

"Training has to be valued, viewed as worth having. It would encourage breaking down barriers, a dedicated curriculum for social service staff on what's available. So when someone asks about it, they'll have a basic answer. "

Medicaid Eligibility Determination/Navigation Issues

More than 40 participants identified areas for improvement related to applying for and navigating Medicaid services. Participants across populations, especially consumers and family members, spoke to problems navigating both the Medicaid eligibility determination process as well as accessing services once enrolled. People also commented on the complexity of Medicaid eligibility.

"It's hard to for people to apply for DD services. Some people aren't even applying because of the hardness and the pointlessness of applying."

"People don't understand Medicaid eligibility."

"It's difficult to navigate geographic boundaries and who can serve who based on where they live."

"Navigating through Medicaid is a nightmare. Payment needs to be quicker, especially when auditor generals are investigating. Facilities are out of money, waiting for the results. If they find fraud did occur then the senior owes the money and they can't afford it."

"There is a long waiting period for even being assessed for a waiver. MCOs could help with this by administering the DON [themselves]."

Suggestions for a Statewide Resource Database

Before the listening session discussions began, representatives from Illinois gave a brief presentation to the participants on upcoming developments to the NWD System, including a website with a statewide resource database providing information about resources and services and LTSS service providers for all populations throughout the state. Participants were very supportive of the idea of such a database, and 27 participants provided specific ideas on how to best capitalize on the database. Many consumers noted that currently not all information is in one place, which makes it difficult to use the existing resource listings. Additionally, participants noted that current resource databases may be outdated.

"We need one database and not four."

"There needs to be a comprehensive list of state and private funding service providers. Enter zip code and get list of all providers, the services they provide and the populations they serve."

"Private services should be included in database."

"We need real time information about available housing and other services."

"Providers should be able to update their own information on database."

Awareness, Marketing and Outreach for LTSS Options

Another notable area for improvement relates to awareness of LTSS available to people who might need services. More than 40 participants said that they or the people they serve often came into LTSS with almost no knowledge of what services and supports were available to them. These participants also referenced low visibility of LTSS across the general population.

"Surprised at how many seniors don't know about home-based services at all."

"People have no idea what services are available when I meet with them."

"People gravitate to the institutionalized setting because there is signage. Home services and smaller services are not visible."

"People are unaware of what's out there for them."

There were 33 participants that commented on outreach and marketing for LTSS is performed, adding that this area could improve as the NWD System develops.

Providers in particular expressed concern over funding for marketing, with many saying they simply cannot afford to advertise their services. These providers frequently cited no-cost or low-cost approaches to outreach, such as word-of-mouth and health fairs. In general, providers characterized these avenues as less effective than higher-cost marketing and outreach approaches.

"There is not enough funding for ads."

"We've tried to get information about HCBS out through health fairs, attending meetings with community programs, sometimes at senior centers."

"We rely on word of mouth mostly."

Consumers receiving services mentioned other issues with marketing, including a lack consumer input into advertising and outreach materials, and the lack of information available outside of urban areas. Select comments on this topic include:

"There is not enough consumer input in marketing"

"Marketing efforts are only as good as what people understand from them."

Improving outreach for and boosting the visibility of LTSS options are two linked areas for improvement the state could consider emphasizing as it develops its NWD System.

Collaboration between State Agencies

36 participants noted that improved collaboration across and leadership from state agencies would strengthen the development of the NWD System. Participants across roles and populations suggested that state agencies do not regularly work in collaboration or share resources. Many participants noted that continuing this trend could jeopardize the development of Illinois' NWD System.

"We need unified leadership from state government agencies for a top down approach [to NWD]."

"State agencies should share marketing resources."

"If this is going to work, we need more buy-in from state agencies, not just Aging."

Themes Emerging from Specific Populations and Different Role Categories

This section of the report identifies strengths and areas of improvement that were noted with more frequency by participants that identified with or work with a particular population or that assume a particular role in LTSS.

Strengths

Independent Service Coordinators

Seven participants who identified with the intellectual or developmental disability (I/DD) population, or who provide services to this population, identified the state's network of Independent Service Coordinators as an area of strength. This was the third most frequent strength cited by those identifying or working with people with I/DD, following referrals at the community level and community level collaboration and networking. Nine providers across all populations also noted this strength.

"I/DD services have good coverage."

"Independent Service Coordinators [are] retraining people, [and] will work with any age range, kids in school and older"

ADRNs and AAAs

10 participants who identified as or work with older adults mentioned strengths related to the Illinois Aging and Disability Resource Networks and Area Agencies on Aging. Additionally, seven providers and two state staff members cited the ADRN/AAA network as an area of strength.

"People know they will get personal attention at the AAA. We'll be straightforward on who to go to."

"The AAAs and case coordination units outside of the Chicago area work very well for people 60 and older."

Areas for Improvement

Issues with State Agency Websites and 1-800 Numbers

Fourteen participants that identify or work with older adults cited issues with statewide websites and the 1-800 information line, stressing the importance of developing consumer-oriented resources.

"Communicating to people about services in their hometowns is important. There is a hesitation to call a 1-800 number that is in Chicago, even though we have information about other places in the state."

"There needs to be a central intake - a call line for people to receive information about what programs are available."

"It's critical that consumers be involved in the development of any website that will be used to disseminate information. The State of Illinois' website is too confusing for consumers to use."

Supporting Independence

Five consumers and family members and five people that identify or work with people with physical disabilities noted a need to help people and families to be independent.

"Young people out there today, their parents are sheltering them. We need to teach them to be independent. We age and die. When mom and dad are gone, kids end up in the care of the State. I refused to let my parents put me in a box and refused to accept living with them forever. I got my own apartment. "

Behavioral Health Services

Consumers that identify or work with people with behavioral health diagnoses (7) cited the need for more services for people with serious mental illness (SMI).

"I'm my brother's guardian. I don't know how anyone with SMI could ever get through this system on their own. Being persistent is critical… Before I became his guardian, no one would talk to me. It was always "it's his decision." Once I became his guardian, the process wasn't so painful, but I've heard from others it is tough…getting doctor's records, filing paperwork for organizations, telling [the] story over and over again. The paperwork that organizations require was a huge barrier."

Next Steps

The State of Illinois will consider the input from stakeholders described in this report. This report will also inform the development of Illinois' NWD System Three-Year Plan, which is due to ACL in 2016. Once the Three-Year Plan is finalized, it will be made publicly available.

Listening Session Report Appendix A- Organizations Present at the Listening Sessions

The following organizations attended at least one of the listening sessions in 2015. Many organizations sent multiple representatives. Additionally, many participants attended on their own behalf and did not self-identify with any one organization. There are 166 organizations represented.

This list presents an unduplicated list of attending organizations.

Listening Session Report Appendix B- Response Categories and Frequencies

Response Categories- Strengths	Comment Frequency
Community level collaboration and networking	56
Referrals between organizations at the local level	47
Person-Centered Counseling/Options Counseling	17
Aging and Disability Resource Networks (ADRNs)	13
Independent Service Coordinators	12
Specific local programs (varied by region)	12
Strong community centers/agencies	10
Primary education system	8
Care Coordination Units	7
Medicaid eligibility/navigation process	7
Electronic data exchange	6
Good training	6
Personal assistance services	6
Centers for Independent Living	5
Current databases and other statewide resources	5
Adult Protective Services/Protection and Advocacy	3
Physicians	3
Consent Decrees (helping to transition people out of institutions)	2
Transportation	2
Existing caregiver programs	2
Cultural competency	2
Department of Human Services	1
Care Transitions Program	1
Olmstead	1

Response Categories- Areas for Improvement	Comment Frequency
More training/education	51
Improve collaboration across state agencies	36
Suggestions for a statewide resource database	36
Medicaid eligibility determination process	28
Improve collaboration/communication at local level	23
Medicaid Offices/Staffing problems and complaints	17
Need more support for caregivers	16
Issues with statewide websites and 1-800 line	15
Stronger networks with providers (hospitals, NF, acute care, physicians)	15
Increase standardization of assessment across waivers/populations	15
Medicaid navigation issues	14
Need better customer service	14
Better IT/Infrastructure - update outdated computers and IT systems	13
Data exchange - need to improve individual-level sharing of data across community orgs and medical providers, at community level, with state, in general	13
Nursing home members need more awareness of services	13
Turf war issues/Silos	12
Better state websites/easier to navigate/better information (separate from resource directory information)	11
Primary education system	10
Interpretation services and language issues	10
More services for people with severe mental illness	9
Need to help people and families to be independent	9
Lack of understanding of disability	9
Division of Rehabilitation Services	8
MCO issues	7
Look at activities of other states/countries	6
Waiting list process	6
Visibility is not good	6
Access to internet/computer	6
Transportation issues	6
Improvements for rural service areas	6
Roles of local agencies	6
Veterans services	5
Division of Developmental Disabilities	5
Focus on community living	5
More housing/residential options	5
Stigma associated with disabilities	5
Medicaid reassessment process	4
People are confused about where to go	4
Better employment services are needed	4
NWD staff with specialty areas and generalists	3
Should be able to apply for Medicaid outside Medicaid agency	3
Social Security application/ staff problems	2
Use staff that have been through the system	2
Expanded state toll-free number will not be able to keep up with call volume	2
More stakeholder engagement	2
Conflict of interest concerns	1
More flexibility in NWD gateway	1
Change HIPAA	1

Response Categories- Strengths and Recommendations about Marketing	Comment Frequency
Internet/websites/social media	35
Broad public advertisements, PSAs (radio, television, newspaper)	35
Marketing to providers	31
Provider-specific and other in-house resources	30
Word of Mouth	24
Community connections, liaisons	22
211	19
Resource and job fairs	16
Referrals from Case Managers	12
Religious Organizations	11

Response Categories- Areas for Improvement about Marketing	Comment Frequency
Problems with marketing (funding, other issues)	33
People do not contact until they are in a crisis	19
Hard to help people who don't want help/are afraid/suspicious of help/embarrassed	13
Does not work to rely entirely on websites and computers	11
General education/outreach	10
Market to younger people	8
Local Shoppers Pages/local newspaper	7
Should improve/unify NWD brand	6

Listening Session Report Appendix C- Response Categories Outside the Scope of the NWD System Listening Sessions

Response Categories- Areas for Improvement within LTSS System Outside the Scope of NWD System Functions	Comment Frequency
Not enough funding for HCBS/Existence of waiting list for services	49
Improve access (general)	20
Federal funding being blocked or held up by state	9
Increase standardization of services across waivers/populations	7

Listening Session Report Appendix D- Written Comments and Questions

Written comments received at and after the listening sessions include:

• Comments noting potential systemic issues in accessing or applying for LTSS, including personal assistance, coordination with the education system and low awareness of current practices.
• Concerns about changes to financial and functional eligibility criteria for waiver services, including the Determination of Need and the Universal Assessment Tool.
• Concerns about losing consumer- or self-directed services.
• Concerns about the state budget/financial situation and implications of that for LTSS, including PACE.
• Concerns that state and local government agency employees may be overworked and are limited in how much they can help consumers' access services.
• Questions clarifying the meaning of CIL (center for independent living).
• Suggestions for additional marketing outlets (e.g., flyers, bus advertisements, radio).
• Suggestions for the statewide resource database that improve access for consumers who are deaf and/or hard of hearing.
• Suggestions of additional stakeholders to include in the NWD System development activities.

Three-Year Plan Appendix C: Goals, Tasks, Timelines and Responsibilities

The finalized NWD System Three-Year Plan Goals are listed below and are categorized into two Tiers. Both Tiers include goals that were identified by stakeholders and the Executive Committee as being high priority. The difference between them relates to the availability of funding, which is not as certain for the Tier 2 goals.

• Tier 1- Goals for which funds have already been identified and/or have relatively low new cost associated.
• Tier 2- Goals for which funding will need to be identified and/or have relatively higher new cost associated.

NWD System Function: Governance and Administration

Goal 1: Identify and formalize permanent state level governance structure with representatives from all participating agencies. Identify existing management processes that could support ongoing governance, convene new management team, develop and execute MOUs outlining each agencies roles and responsibilities for dedicating staff, commitments from leadership to coordinate policy in areas related to accessing LTSS

Tier: 1

Task	Timeline (after implementation)	Responsible Party/Parties
Identify potential deliverables, goals, benchmarks for each department	Within 6 months	Executive Committee
Solicit feedback from Governor's Office, GOMB and state agencies on potential deliverables, goals, benchmarks	Within 6 months	IDOA
Draft initial MOU template	Within 6 months	IDOA
Circulate MOU to AAAs and solicit feedback	Within 12 months	IDOA to send, AAAs to respond
Circulate MOU to state agencies and solicit feedback	Within 18 months	IDOA to send, state agencies to respond
Revise MOU based on feedback, partnering with state agencies	Within 24 months	TBD, possibly department heads
Share MOU with department heads	Within 24 months	Sister agencies
Convene department heads and secure buy-in	Within 30 months	IDOA to coordinate IDOA Director to conduct outreach
Finalize MOU and obtain necessary signatures/approval	Within 36 months	Department heads

NWD System Function: Governance and Administration

Goal 2: Develop and institute standard policies across agencies setting expectations and requirements for community-based organizations in the NWD System funded by each agency. Includes establishing common criteria for designation as NWD entry point, changing administrative rules as needed, issuing rule amendments, issuing mandates from each state agency (tied to funding or contracts), and/or establish shared standards, performance expectations and defined roles set by the state agency or agencies.

Tier: 1

Task	Timeline (after implementation)	Responsible Party/Parties
Identify appropriate state agency staff to support standardizing policy	Within 6 months	Department Heads to identify IDOA to conduct outreach
Secure participation from state agency staff to support standardizing policy	Within 6 months	Department Heads to identify
IDOA to conduct outreach
Identify best practices across partner/state agencies	Within 12 months	All state agencies Department heads to identify
Explore and pursue potential Medicaid administrative claiming opportunities	Within 12 months	IDOA/state agencies
Potentially develop communications to CBOs that clearly share updated criteria, rules, etc.- including Level 1/UAT	Within 18 months	Sister agencies to provide input to an agency identified by the department heads
NWD System Function: Governance and Administration Goal 3: Establish standing statewide advisory group with stakeholders from all populations, consumers and family members, providers, payers to inform and shape policy (integrated with existing stakeholder advisory groups as appropriate). Tier: 1
Complete stakeholder planning, logistics (including membership)	Within 6 months	Executive Committee
Identify potential stakeholder group members (considering membership of existing groups (e.g., BIP Policy/Stakeholder Group)	Within 6 months	Department heads to identify a given number of stakeholders per population/group
Identify potential responsibilities via department heads (e.g., a tangible task/product)	Within 12 months	Department heads
Convene stakeholder group	Within 12 months	Convener TBD Statewide Stakeholder Advisory Group
Formulate stakeholder charter	Within 12 months	Convener TBD Statewide Stakeholder Advisory Group
Finalize charter with the stakeholder group	Within 12 months	Convener TBD Statewide Stakeholder Advisory Group
Add additional action steps based on final charter	Within 18 months	Convener TBD Statewide Stakeholder Advisory Group

NWD System Function: Public Outreach

Goal 4: Strengthen and standardize partnership agreements and mutual referral protocols between aging, disability, behavioral health, employment resources, homelessness, housing, transportation, and other services organizations at the community level (e.g., ISCs, AAAs, CILs, CMHCs, COCs, CCUs) Tier: 1

Task	Timeline (after implementation)	Responsible Party/Parties
Send survey to aging and disability networks to identify current referral protocols, collect examples of written agreements and common practices	Within 12 months	NWD Executive Committee
Review and analyze survey data as well as examples from other states to a standard set of agreement components or a menu of components that local organizations could use or tailor.	Within 18 months	NWD Executive Committee
Provide documentation and recommendations on standardized agreements to department/ agency heads	Within 24 months	NWD Executive Committee
Identify next steps re: distribution of standard agreement templates and training	Within 30 months	NWD Executive Committee

NWD System Function: Public Outreach

Goal 5: Develop statewide brand and marketing strategies to increase visibility and communicate effectively with all target populations

Tier: 2

Task	Timeline (after implementation)	Responsible Party/Parties
Incorporate consistency in messaging, accessibility and instructions about LTSS options developed by the Streamlined Access work group.	Within 6 months	Streamlined Access and Marketing work groups
Recruit a marketing working group from the state agencies/divisions serving the NWD target populations	Within 12 months	State agencies/division staff
Develop statewide guidelines and standards that Illinois 13 NWD regional networks must incorporate in their marketing and outreach campaigns (e.g., brochures, websites, coordinated entry points) that include the state's approved program name and logo and the 2010 Plain Writing Act recommendations.	Within 18 months	State agencies/division staff
Support local NWD partner participation by ensuring that branding and messaging standards don't detract from each agency's individual image.	Within 18 months	State agencies/division staff with input from NWD regional networks
Provide each regional NWD network with recommendations from the statewide listening sessions for publicizing the NWD System	Within 24 months	Marketing work group
Get input from cross-disability stakeholders on barriers to information about services that the marketing plan must address and solicit their feedback on marketing strategies and products	Within 24 months	Statewide Stakeholder Advisory Group
Incorporate information on Illinois Statewide Housing Referral Network for consumers and professionals in the marketing plan.	Within 24 months	Statewide Housing Coordinator

NWD System Function: Public Outreach

Goal 6: Increase capacity of existing 1-800 number call center to serve all populations through increased staffing and enhanced staff training

Tier: 2

Task	Timeline (after implementation)	Responsible Party/Parties
Increase the number of staff at toll-free call center	Within 12 months	DHFS/IDOA/DHS
Develop a training curriculum to expand operators' knowledge of NWD disability populations, state service systems, and how to conduct a Level One Screen.	Within 12 months	Training staff from state agencies/divisions
Train operators via a webinar that will be recorded for ongoing use	Within 18 months	State agency/division trainers
Designate specific operators to be call center trainers that will instruct operators about policy and procedural changes and be liaisons between operators and state agency/division staff.	Within 18 months	Call center operators
Create or expand existing electronic data bases of local coordinated entry point operators to engage for making referrals.	Within 24 months	Regional NWD network partners and state agencies/divisions

NWD System Function: Public Outreach

Goal 7: Develop and implement "Level One" screening tool and processes to identify and refer people for further person-centered counseling and/or to initiate a comprehensive assessment for multiple HCBS programs.

Tier: 2

Task	Timeline (after implementation)	Responsible Party/Parties
Identify data to be included in level ones screening and ensure it meets HIPPA requirements	Within 6 months	State agency/division staff on the Universal Assessment Tool (UAT) committee
Develop and test software	Within 12 months	UAT software vendor, UAT Committee Reps, Toll Free Call Center (if operators will conduct Level One screens)
Wave I Roll Out	Within 12 months	DHFS/IDOA/DHS
Statewide Roll Out	Over the course of 12 months (e.g.,through June 2017)	DHFS/IDOA/DHS

NWD System Function: Public Outreach

Goal 8: Help people access information and resources about affordable and accessible housing and supportive housing

Tier: 2

Task	Timeline (after implementation)	Responsible Party/Parties
Utilize existing resources (e.g., IL Housing Locator and PAIR Module, "Heads Up on Housing" newsletter, DHS and IHDA websites) to spread information related to housing	Over the course of implementation (e.g., through 2019)	NWD Executive Committee

NWD System Function: Person-Centered Counseling

Goal 9: Increase and expand staff capacity across organizations in the network to provide one-on-one counseling using person-centered processes for all populations

• Align with principles and philosophy of independent living and self-direction
• Align with federal regulations for Person-Centered Counseling and Person-Centered Planning
• Ensure providers are developing and writing service plans with the involvement of consumers and families

Tier: 1

Task	Timeline (after implementation)	Responsible Party/Parties
Identify and convene workgroup to carry out PCC tasks	Within 6 months	NWD Executive Committee to determine who will convene/facilitate group Members:
		State agencies Potentially include consumers, advocates, caregivers, etc. and additional stakeholders
Identify both foundational skills and specific (e.g., cultural- specific, diagnosis-specific) skills for PCC/PCP	Within 12 months	PCC Workgroup
Build a standard, foundational training curriculum to use across state agencies	Within 18 months	PCC Workgroup
Review current curriculum and identify opportunities to revise/add content to include PCC	Within 24 months	PCC Workgroup
Determine sustainability approach for training and capacity	Within 24 months	PCC Workgroup
Convene NWD Executive Committee (either as a whole or a subgroup) to review current training curriculum.	Within 24 months	PCC Workgroup/NWD Executive Committee
Conduct evaluation/review of agency-specific training curriculum.	Within 30 months	State agencies/division staff
Solicit feedback and input from NWD System-involved agencies (e.g., DHFS, DHS- DD, DMH, DRS, DASA)	Within 30 months	PCC Workgroup
Tailor training curriculum for use by each specific agency and/or organizations	Within 36 months	State agencies/division staff

NWD System Function: Person-Centered Counseling

Goal 10: Develop standardized "toolkit" of resources, processes, formal guidance, and performance expectations to make available to all organizations in network providing person-centered counseling Tier: 1

Task	Timeline (after implementation)	Responsible Party/Parties
Convene small workgroup comprised of person-centered counselors, people who use services and families/caregivers to develop toolkit to make decisions and delegate action step responsibilities.	Within 6 months	<meta name="generator" content="OneNet Editor" />
Review available resources: books, websites, videos, training options	Within 6 months	PCC Workgroup and designees
Decide which resources are most useful and applicable for toolkit	Within 12 months	PCC Workgroup and designees
Design draft step-by-step guidance (written and web- based) for use by person-centered counselors when conducting person-centered counseling - solicit input from PCCs on the processes they currently use to build guidance Include in the guidance recommendations from people using services about language, approach, etc.	Within 12 months	PCC Workgroup and designees
Consider inclusion of fact sheets from advocacy organizations
Solicit feedback from PCCs on draft guidance	Within 18 months	PCC Workgroup and designees
Revise guidance based on feedback	Within 24 months	PCC Workgroup and designees
Develop an updated "standards of practice" for person- centered counselors; using input and feedback from current person-centered counselors, along with current ACL expectations	Within 30 months	PCC Workgroup and designees

NWD System Function: Streamlined Access

Goal 11: Connect people who are eligible for LTSS to housing services and/or affordable supportive housing resources for which they are also eligible

Tier: 1

Task	Timeline (after implementation)	Responsible Party/Parties
Review and/or revise items on screens (e.g., Initial Screen) that relate to housing	Within 6 months	DHFS
Build appropriate triggers and referral scenarios based on Initial Screen	Within 12 months	DHFS
Coordinate with Innovation Accelerator Program (IAP) grant team to identify opportunities to connect people to housing services	Within 18 months	DHS/IAP team
Utilize findings from the IL Supportive Housing Workgroup's upcoming report on the current landscape and unmet needs in supportive housing to inventory existing housing resources at both state and federal levels.	Within 18 months	DHS/NWD Executive Committee
Coordinate with Statewide Housing Coordinator on housing-related matters, encourage use of the online supportive housing waiting lists within the State of Illinois' housing locator (www.ILHousingSearch.org)	Over the course of implementation (e.g., through 2019)	DHFS

NWD System Function: Streamlined Access

Goal 12: Promote consistency in messaging and instructions about LTSS options across the state. Use the same language and terminology across all programs and agencies.

Tier: 1

Task	Timeline (after implementation)	Responsible Party/Parties
Develop inventory of common acronyms, words and definitions, possibly including a cross-walk to show differences across populations	Within 12 months	DHS/NWD Executive Committee
Identify possible common terms/phrases and determine whether these can translate across populations.	Within 12 months	NWD Executive Committee /BIP Policy Group
Develop an agreement between sister agencies to govern common language/terming (e.g., MOA, IGA)	Within 18 months	NWD Executive Committee /BIP Policy Group
Identify point of accountability for MOA/IGA within each state agency	Within 24months	NWD Executive Committee/BIP Policy Group

NWD System Function: Streamlined Access

Goal 13: Develop and implement uniform assessment tool (UAT) for identification of need, eligibility determination and service planning.

Tier: 2

Task	Timeline (after implementation)	Responsible Party/Parties
Secure software vendor	Within 6 months	Governor's office/CMS
Develop and test software	Within 12 months	Governor's office/CMS
Wave 1 Roll Out	Within 12 months	DHFS/IDOA/DHS
Statewide Roll Out	Over the course of 12 months (e.g.,	DHFS/IDOA/DHS
	through June 2017)

NWD System Function: Streamlined Access

Goal 14: Develop common client tracking system accessible to all organizations in the network (as part of UAT) Tier: 2

Task	Timeline (after implementation)	Responsible Party/Parties
Secure software vendor	Within 6 months	Governor's office/CMS
Develop inventory of existing client tracking systems and current uses across waiver programs	Within 12 months	DHFS
Present inventory to BIP Technical Group for comments/refinement	Within 12 months	BIP Technical Group
Determine if software platform will have capability to track consumers across system	Within 12 months	BIP Technical Group
Develop and test software	Within 24 months	Governor's office/CMS
Pre-load existing consumers into software	Within 30 months	DHFS/IDOA/DHS

NWD System Function: Streamlined Access

Goal 15: Improve transitions and data sharing between initial entry point person-centered counselor and Medicaid eligibility staff, Medicaid case managers, and Medicaid or private managed care organizations. Tier: 2

Task	Timeline (after implementation)	Responsible Party/Parties
Determine whether common client tracking system can facilitate data sharing	Within 12 months	BIP Technical Committee
Identify protocols and/or agreements needed for data sharing (e.g., MOU)	Within 18 months	BIP Technical Committee
Develop help desk for PCC with questions from the field	Within 24 months	DHFS/IDOA/DHS
Identify Medicaid eligibility staff/help desk to support PCCs in the field with Medicaid related questions	Within 24 months	IDOA