Team 2: Intake and DD Eligibility Meeting Minutes (4-16-14)

Meeting Location:  CISA, 101 Madigan Avenue, Lincoln, IL

Members Present

  • Heather Houser, Prairieland
  • Geunyeong Pyo, DHS DDD
  • Queen Dickerson, Service, Inc.
  • Kimberly Johnson-Evans, Parent
  • Katherine Hamann, The Arc/Guardian
  • Julie Hobson, CSO, Inc.
  • Mary Lou Bourne, (Facilitator) NASDDDS
  • Mary McGlauchlen, CISA
  • Wanda Thomas, AID
  • Shelly Lawler, SICCS
  • Vickie Kean, Don Moss & Associates

Members Absent

  • Ginny Jarrell, DDSME
  • Alice Devan,y DDSME
  • Molly Danay, CSO-RIM
  • Amy Kaiser, DayOne
  • Sean Walsh, DDD/BCS
  • Shirley Perez, Family Support Network

Meeting Notes

Agenda Item 1: Welcome & Introductions

Agenda Item 2: Review of Assignments 

There were no assignments from the last meeting for participants. The group reviewed the video from the last meeting, Microsoft Vision of Healthcare in the Future and asked themselves, how much have we changed? Are we as innovative as we can be? Do we collect enough of the correct data to give us information to move forward? Is the data we collect useful?

Agenda Item 3: Changes and New CMS Rule 

Senior management staff has been meeting for over a year planning for future expectations on the DD system from various groups, including young families, and changes coming through Several Illinois initiatives including the 1115 Waiver, Balancing Incentive Program and compliance with the new CMS rule on community services. The new CMS definition of community based setting assures that individuals receiving long term services and supports through home and community based waiver services will have full access to benefits of community living in the most integrated setting. We briefly reviewed the changes in the rule.

Agenda Item 4: What's Working, What's Not, What Should Stay, What Should Go

Discussion: Because there is no uniform practice, there is a lot of anxiety and confusion around intake and eligibility and can be very stressful and overwhelming for families. Many people don't know who their PAS agency is or what role the play in the process. People don't understand the letter they receive notifying them they have been pulled off the PUNS list. (Recommend to PUNS group to consider how notification is given.) 

The current intake design is reactive versus proactive. One example given is that some guardians are either told or is hinted to that if they were to take their loved one to a homeless shelter they would then qualify for crisis services. It was generally agreed that there have been a lot of changes in services over the years but that Intake & Eligibility has not changed with them.

Following are the areas of the intake and eligibility process that are not working and possible actions that were suggested to make the system work better for people.

Not Working Action
No uniform Practice of Intake &
Develop Uniform Practice of Intake & Eligibility
Identification of PAS Agency and their role in the process
of obtaining services
Develop an outreach plan to educate families about PAS agencies & their roles
Eligibility determination-(this is simply eligibility for services
not approval of
specific services or plan)
Eligibility must be determined as soon as possible BEFORE being put on the PUNS list.
Amount of time it takes to get on the PUNS due to requirement
of updated physicals and psychological to be in place prior to
being placed on the PUNS list
Intake should be short and sweet. Take demographics and then utilize an assessment that
will answer the question: Does this person meet developmental disability eligibility criteria, yes or no?
Intake starts too late Intake should start with at least the Transition IEP if not with Early Intervention services
Time frames required since the last physical or psychological
assessments were completed
Extend the allowable time since the physical and/or psychological assessments were last completed.
Annual renewal of PUNS People do not know they are supposed to renew annually. Include this information in the outreach
plan or the FAQ document.
Cursory evaluations that don't tell anything or add any
value to the current information. ICAP scores are not reliable
Make sure the evaluations and assessments are meaningful and useful; if only used to determine
eligibility then they should be succinct and efficient.

Agenda Item 5: What Action is Needed

Team members were asked to take a couple of hours and review the OBRA sections of the PAS manual and put together a plan of what it would look like if you were in charge. Some additional issues and potential resolutions were also discussed and are listed below as well.

Issue Action
Update and streamline the intake & eligibility process Team members will take the appropriate sections of the PAS manual and determine what it would look
like if they were in charge. What would you edit, delete, change, streamline? What DD eligibility would
look like BEFORE being put on the PUNS? The PAS manual can be accessed at the following link: 
Families/individuals have trouble following the process
of intake/eligibility.
Develop a flow chart for families
PAS agencies get many questions over and over from
families and individuals
Develop a FAQ on eligibility
No known person at HFS to deal with HCBS Waivers Request that HFS identify, train and inform agencies of a specific person to deal with HCBS Medicaid
application in each region.
Eligibility too long Possibly develop different levels that would dictate the types of assessments required. For example: If
someone is assessed at the severe/profound level they would automatically be determined eligible for
DD system, and be included on PUNS without further assessment. Whereas someone else with a
milder diagnosis or a related condition might require additional assessments identified by level of care.
Anecdotal reports indicate many people on the PUNS list
may not actually be eligibile for DD services. There seems
to be a real disconnect between the Autism community
and the PUNS list. Many people on the list may have
autism but still not be eligible for services.
Refer to PUNS Team with recommendation to investigate the possibility of "cleaning up" the PUNS
PAS agencies get questions regarding the PUNS. Refer to PUNS Team to develop a FAQ like that of the Family Support Program.
How will children be dealt with in the new system? How children will be assessed/reassessed needs to be determined.

Agenda Item 6: Next Steps & Wrap Up

The following general observations were shared during the meeting:

  • Compared to other states, Illinois has very high guardianship numbers. 
  • Facilitator indicated she is not aware of other states that require proof that someone does not require 24 hour nursing care. Not aware of other states that require documentation of the need for active treatment, which is not required by CMS for 1915c waiver funded services (see highlight below from Medicaid Letter, dated March 6, 1997:


    Federal regulations for the ICF/MR program require that individuals residing in ICFs/MR receive a continuous active treatment program. Active treatment is defined as aggressive consistent implementation of a program of specialized and generic training, treatment, health services and related services that is directed toward the acquisition of the behaviors necessary for the individual to function with as much self determination and independence as possible; and the prevention or deceleration of regression or loss current optimal functional status. Active treatment does not include services to maintain generally independent individuals who are able to function with little supervision or in the absence of a continuous active treatment program. While regulations in 42 CFR 483 Subpart I are cross-referenced through §441.302(c) and §440.150, there is no requirement for implementing regulations that an individual in need of ICF/MR services receive active treatment under the 1915(c) waiver. The active treatment concept is based on the assumption that art individual is a resident in an institution (which is required to provide all necessary care and services for that individual). The applicability of active treatment, therefore, is limited to the institutional setting. Federal Law requires that individuals served under the waiver would be eligible, in the absence of the waiver, to receive active treatment in an institution (in this case, an ICF/MR).

  • Families of young people with Autism are requesting that Autism be considered a developmental disability if functional limitations are also present as a related condition to obtain DD services.
  • Eligibility for services is not determined simply on diagnosis but if the person meets the eligibility criteria for state and federal funded services.

Agenda Item 7: Next Meeting 

It was agreed that in-person meetings are more productive so everyone is encouraged to attend the next meeting in person if at all possible. Sandwiches from Jimmy Johns or Subway will be provided.

MAY 1, 2014, 10:00 AM - 2:30 PM
CISA - 101 Madigan Ave.