Thanks to the Illinois Council on Developmental Disabilities, the entire PUNS (Prioritization
of Urgency of Need for Services) process is being revisited. Celia Feinstein of CFA, Inc.
has been contracted to hold listening sessions around the state to get recommendations
from self-advocates, families and stakeholders. Celia helped set up the first PUNS process
in Illinois and many other states.

The Arc has been assisting by recruiting individuals to provide recommendations and
advertising the schedule of the listening sessions.

The Arc authored the original cross-disability data-base legislation that became PUNS. We
have always advocated for PUNS to become the process for entering the disability system.
We are pleased that the process is once again being reviewed.

This is an extremely important opportunity to have your voices heard to improve the PUNS
process, but any process is extremely difficult for the now 23,029 children and adults on the
waiting list. Remember that because of the Ligas Implementation Plan, 3,000 individuals will
move off the waiting list and the waiting list should move at a reasonable pace. The real
problem is ending the waiting list and this is where we need to direct our advocacy.

Needless to say, with the listening sessions now taking place, there is a lot of discussion
about PUNS and some misconceptions about the process have emerged as we have been
discussing this with our team here at The Arc.

Some of us, including me, have been calling this a lottery. That is incorrect and I need to
eliminate that term from my advocacy to end the waiting list. As Director Casey and the
Court Monitor have pointed out to me, there is a process in place, not a lottery. Thanks in a
large part to the Ligas Implementation Plan, there is a more refined criteria for selection. The
criteria looks at the age of the caregiver at the first level, whether the situation is an emergency
or critical (not crisis) and the next level are individuals who have aged out of special education
in the last five years and time on the list. Summary data about the number of those selected
is posted on the Division’s website for everyone to see and at the end of this report.

So let me share with you information from the Division of Developmental Disabilities website to
explain what has been put in place as we await the removal of another 500 individuals from the PUNS waiting list and these listening sessions continue.

Those sections include:

1.     The Waiting List for Community Services and Placement
2.     Community Crisis
3.     PUNS Selection Summary
4.     Total PUNS Summary

For more information about PUNS and other advocacy resources in Illinois connect with the
Illinois Life Span Program
or the Family Support Network.

I.       Waiting List for Community Services and Placement

“Paragraph 22(d). Within two (2) years after Approval of the Decree, Defendants shall provide,
in accordance with the Class Members’ Transition Service Plans, appropriate Community-
Based Services and/or placement in Community-Based Settings for at least 1,000 Waiting
List Class Members who are selected from the Waiting List…with these Class Members
served in order of priority. In each of the third, fourth, fifth and sixth years following Approval
of the Decree, Defendants shall serve at least 500 additional Waiting List Class Members
who are selected from the Waiting List, again in order of priority.

Paragraph 23. All Class Members who are on the Waiting List after the end of the sixth
year following Approval of the Decree shall receive appropriate Community-Based Services
and/or placement in a Community-Based Setting, such that they move off the Waiting List
at a reasonable pace…”

Over the first six years of the Decree, the DDD is to serve under the Medicaid Waiver an
additional 3,000 individuals from the waiting list. The addition of these 3,000 capacities will be accomplished by adding people to both the CILA and HBS programs. The DDD will use the
following process for selecting individuals to be served from the Class Member waiting list:

A. Exclude anyone whose record is not labeled as a Ligas class member. As secondary
edits to double check for accuracy of the list and selection, exclude the following records in all cases:

·          Persons previously selected in PUNS selections [These individuals have already been
chosen and offered services.],
·          Persons in the Planning category [These individuals are not seeking services within the
year, but are anticipating the need for services within five years.],
·          Persons who are under the age of 18 [These individuals are not Class Members.],
·          Persons residing in Child Care Institutions (Program Code 19D) and Community Living
Facilities (Program Code 67D) [These individuals are already receiving residential services.],
·          Persons already enrolled in the Children’s Support and Residential Waivers (Waiver
Codes D1 or D2) [These individuals already have a funding path for entrance into the adult
·          Persons who are client type [These individuals are not Class Members.]:
o     B, Bogard Class Members,
o     C, CILA participants,
o     F, Family Assistance Program developmental disabilities participants,
o     K, Family Assistance Program mental health participants,
o     S, State-Operated Developmental Center residents, and
o     W, Mental Health Home-Based Support Services participants, and
·          Persons who are client type [These individuals already have a funding path for entrance into the adult Waiver.]:
o     G, Children’s Support Waiver participants, and
o     R, Children’s Residential Waiver participants.

When selecting adults for HBS, exclude anyone already in the HBS program.
Selections will include individuals enrolled in the adult Waiver who indicate a need for more services. For example, persons receiving day program services but who may request in-home supports, or persons receiving HBS services but who may request CILA services, will be included in the selection process for the 3,000 capacities. Individuals admitted to ICFs/DD after June 15, 2011 who choose to move will also be included in the selections.

For every 100 individuals selected, include for residential services criteria:
·          25 individuals who are recorded on the PUNS database as being in an emergency situation (i.e., needing services immediately)xiv and needing out-of-home supports
·          25 individuals residing at home with a primary care giver age 75 or over

For every 100 individuals selected, include for Home-Based Support Services:
·          20 individuals who are recorded on the PUNS database as being in an emergency (i.e., needing services immediately) or critical (i.e., needing services within the year) situation and needing in-home or day supports
·          15 individuals leaving the Public School System in the last 5 years (use age 22 as selection criteria)
·          15 individuals residing at home with a primary caregiver age 60 or over

Within each category, selections will be made by length of time on the database.

The DDD will select sufficient numbers to enroll in the Waiver 1,000 individuals in the first two years of the Decree and 500 in each of Years three through six.
With the expansion envisioned under the Decree, it is believed the waiting list will move at a faster pace after Year Six. The DDD will track and post on its website the average length of time individuals wait on the PUNS database.

At the end of July of 2011, of the individuals actively enrolled in PUNS, 16% were recorded as being in the emergency category (i.e., needing services immediately), 54% in the critical category (i.e., needing services within the year), and 30% in the planning category (i.e., needing services within the next five years). Summary information regarding the PUNS enrollments can be found on the DDD’s website.xv

II.     Community Crises

“Paragraph 21(c). Defendants shall ensure that all Class Members who are determined to be in a situation of Crisis, and who request to receive Community-Based Services and/or placement in a Community-Based Setting, receive such services and/or placement in such setting expeditiously.”
The PAS/ISC agencies will continue to submit requests for services from individuals in crisis situations, and the DDD will continue to process these requests, using existing criteria available on the DDD website.xvi These requests are not part of the 3,000 capacities to be provided under Section VII, Waiting List for Community Services and Placement. The DDD will ensure individuals are served expeditiously.
As the Implementation Plan is being written, the DDD has provided the Monitor with baseline information regarding crisis requests approved and denied during FY10, FY11, and FY12 (year to date). As part of its compliance reports, the DDD will continue to provide to the Monitor data regarding the crisis requests approved and denied. The Monitor will review a sample of these requests and will be given access to the individual files.

III.   PUNS Selection Summary – Ligas Oct, 2013

1680 individuals were originally selected, but 50 individuals were removed from the selection for various reasons through working with the PAS agencies. These reasons include death, moved out of state, etc.
Table 1: By Selection Category

Category # %
Adults needing waiver services (including CILA and HBS) and living at home with a caregiver who is age 75 or older 15 less than 1%
Adults needing waiver services (including CILA and HBS) immediately or within one year 910 54%
Adults needing HBS services and living at home with a caregiver who is age 60 or older 225 13%
Adults who are 22 – 26 years old, have left special education within the past 5 years and need HBS services 225 13%
Adults needing HBS services immediately or within one year 300 18%
Adults living in ICFDD and choosing CILA services 5 less than 1%
TOTAL 1680

Table 2: Selection by Age of Applicant

Applicant is aged 60 or older 35 2%
Applicant is aged 50-59 85 5%
Applicant is aged 40-49 130 8%
Applicant is aged 30-39 244 15%
Applicant is aged 29 or younger 1186 70%
TOTAL 1680

IV.  PUNS Summary – Aug, 2013

This summary reflects what the 23,029 people on the waiting list are requesting:

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)