Chairperson Gabel and Members of the Committee, thank you for the opportunity to
present this testimony on the Integrated Care Pilot.

I have been heavily involved with the planning stages and roll out of the Integrated
Care Pilot since its inception. I was pleased to serve on the original stakeholders task
force in the planning stages of Phase I & II.I commend the Director and the staff of Health Care & Family Services for the involvement
of stakeholders in the planning and roll out of Phase I. While everyone felt the timeframe to
impose the Integrated Care Pilot was too aggressive, the planning went forward.  In fact,
at the stakeholder meetings, there was excellent discussion with  key staff of HFS and the
insurance companies; and it was not unusual for the CEO’s of Aetna and IlliniCare also be
part of the meetings for Phase I.

This was not the case for Phase II, in our opinion.

Seven years ago, The Arc was honored to receive a federal grant to establish a “Family to
Family Health Information Center.”

As a result, we are a statewide health information resource for families who have children
with special health care needs.

Over the past seven years we have assisted thousands of family members, providers and
other professionals with all manner of health questions and concerns related to children and youth
with special needs. During our past project year alone, we provided direct assistance to 1,624 individuals
– 749 families and 875 professionals. An additional 426 family members and 600 professionals participated
in F2F-sponsored training events statewide.

These numbers reflect only the families and professionals we serve who are involved with children up to
age 21.

An additional 20% of our requests for assistance concern adults with special health needs and disabilities
of any age, ranging from 22 years old to senior citizens.

They call us when they have nowhere else to turn, and we always assist them, although they cannot be
“counted” for our project.

When the Integrated Care Program was in its start up for Phase I, we were inundated with questions from
self-advocates, families and providers. All staff members devote considerable time and effort to reviewing
available information from both HFS and the two ICP Managed Care Organizations in an attempt to address
the numerous questions and concerns from the special needs community.

As a result, our staff developed our Illinois Integrated Care Program Advocacy Toolkit in May, 2011, in both
English and in Spanish:

We intend to update these documents when information that is more detailed becomes available
regarding the ICP Expansion, which commenced in April, 2013.

Here are The Arc’s recommendations based upon the thousands of individuals who have connected
with us regarding the implementation of Phase I & II.

1.     Increase stakeholder involvement statewide for ongoing advisory committees, as well as at public hearings and other meetings, with equal involvement of all disability/diagnostic groups.
2.     Promote and endorse the use of Single Case Agreements (SCA) especially for people with special health care needs. Provide an SCA request form available in hard copy as well as on the website of each MCO. Ensure that each member receives a hard copy of each approved SCA for their records.
3.     Implement specialized case management services staffed by qualified health care professionals, following the model developed by Illinois’ Title V Children with Special Health Care Needs Program, UIC-Specialized Care for Children
4.     Re-instate the Traumatic Brain Injury care coordination program, along with opening a network of Brain Injury Clubhouses in all geographic regions served by Phase II:

5.     Require pre-service and continuing education training of Care Coordinators on disability and special health care needs.
6.     Develop new service delivery models. For example, permit Personal Assistants to provide supports to their clients in the community, not just inside their homes.
7.     Access to technology, including Assistive Technology, should be a part of everyone’s Individual Care Plan. Care Coordinators should have training in assistive technology. Increase access to timely and thorough assistive technology evaluations, along with streamlining the procurement process.
8.     Facilitate access to home modifications, including timely evaluations and expedited implementation.
9.     Facilitate access to medically necessary rehabilitative and habilitative therapies. Recruit network therapists across disciplines with specific training and expertise in enrollee’s unique special needs. for example
10. Facilitate involvement in local and regional initiatives, for example, to increase access to affordable, accessible housing and transportation.

Lastly, The Arc opposes Phase III of the Integrated Care Program which places all developmental disability services under the umbrella of managed care organizations. Our position statement is at the end of this written testimony.

Tony Paulauski
Executive Director

Additional Recommendations for Integrated Care Program hearings 9/17/13

1.     Provider network adequacy:
Adequacy of provider networks for persons with special health care needs continues to be an issue.
Several major medical centers, which have highly specialized services for specific populations, do not participate in any of the Medicaid managed care networks.
Consumers continue to report difficulties in arranging for Single Case Agreements (along with difficulties in getting the insurers to pay claims generated by SCA encounters, which has resulted in some consumers being turned over to collection agencies by the providers).

Recommendation – includes the following medical centers in the Integrated Care Program and/or ensures provision of Single Case Agreements for patients served by them:

(Update: both LaRabida and Northwestern now participate with both Aetna and IlliniCare; Loyola is now listed as Foster McGaw Medical Center and is still with Aetna.)

Lurie Children’s Hospital

University of Chicago Medical Center

2.     Provider network adequacy – ICP expansion regions:

Illinois Medicaid has had reciprocal agreements with medical centers in the five states that border Illinois for some time, and individuals with special health needs have been able to access care in WI, IN, IA, MO, and KY.

We have been unable to ascertain if these reciprocal agreements will remain in place under the ICP expansion and which out-of-state medical centers will be “in-network” for residents of the expansion areas.

We need current information on networks for the expansion areas.

3.     Behavioral health provider network adequacy:

We need specific information about the breakdown and distribution of behavioral health providers by discipline:

E.g. – IlliniCare lists 20 different types of “Behavioral Health Providers”- what % are psychiatrists, what % other disciplines?  Aetna lists psychiatry separately.

Information needs to be shared regarding which psychiatrists are willing to see patients who also have developmental disabilities, plus details regarding the “accessible” offices. (Aetna includes this information, but IlliniCare does not.)

4.     Refinement of Provider Finder function on websites:

All ICP HMOs need to add directionality to their “provider finder” online searches, in addition to the number of miles from one’s location.

5.     Transparency of care coordination functions:

Enrollees need to be given more information regarding making informed choices regarding participation in the care coordination options (beyond choosing whether to participate), as well as more information about the care coordination process itself:

a.     Information regarding the background, training and experience of the care coordinators available (i.e. – why would a participant with a physical disability be assigned to a care coordinator who is an addiction counselor?)
b.     Information regarding how care coordinators are assigned and how consumers can request a change of coordinators
c.     Shared information regarding the care coordination classification of each enrollee (their “tier”), how this was determined, and the case load size for coordinators serving each tier.
d.     Opportunity for enrollees to provide consumer satisfaction input specific to care coordination.
e.     Attrition rates of care coordinators to be reported annually by each health plan
f.      Callback timelines for care coordinators needs to be clarified.

6.     Analysis of “one stop shopping” functions – ( preparing for initiation of ABE ) of MCO care coordination:

a.     Each MCO to report on number of enrollees with developmental disabilities annually:
1) receiving DD services, by type
2) on PUNS waiting list, annual renewal in place
3) not on PUNS, referred to ISC, follow-up tracked
4) not on PUNS and not referred to ISC, with explanation
b. referral to other benefit programs, as applicable:
1) SNAP (Food Stamps)
2) School Nutrition Program
3) Energy Assistance
4) Others (specify)
c. transition assistance specific to youth ages 19-21
1) client fully informed of EPSDT rights
2) client assisted to access EPSDT-covered services (e.g. dental, Rx, therapies)
3)client supported to obtain all medical documentation required for IEP annual reviews and transition plans (e.g.- therapy prescriptions, modified lunch documentation, school nursing orders, home/hospital documentation as needed, health transition goals in IEP etc)
4) referral to appropriate adult providers for both primary and specialty care within network OR timely facilitation of Single Case Agreements for current providers
5) Inclusion of Lurie Childrens Hospital in all MCO networks

7. Improve information sharing about the new MCOs participating in the ICP expansion:

1.     Immediately update the HFS Managed Care page (last viewed on 9/04/13) to include all MCOs currently participating in the ICP and ICP expansion (currently only Aetna and IlliniCare are listed):

2.     Updated information about the ICP expansion is imbedded in the Coordinated Care Initiative webpage, However, website changes should be made to make this detailed information easier for consumers to locate, navigate and utilize:

a.     Update the ICP webpage (as mentioned above)
b.     Make all information available in accessible formats (for example, the roll-out/expansion state map is available as a graphic only, with no text version.
c.     Add URLs of all participating MCOs to the online information, so consumers and advocates can go directly to their websites.
d.     Require MCOs to share complete and accurate information with enrollees, including program and policy information that does not appear either in the Member Handbook or on the MCO website. (E.g. – A staff member was told by a care coordinator “benefits information is proprietary information, not to be shared with consumers.” The staff person reminded her that the ICP is a publicly-funded program, subject to CMS regulations.)

The Arc of Illinois
Phase Three of Managed Care in Illinois:
Position Statement

June 18, 2013

The Arc of Illinois stands in determined opposition of the implementation of Phase Three of the Illinois Integrated Care Program (ICP).  We do not believe that for-profit Managed Care Organizations (MCOs) can, or will, adequately respond to the unique and fluid needs of individuals with intellectual and other developmental disabilities (IDD) in a community-based, person-centered, and self-directed manner focusing on individual choice and family involvement. We call on the Administration to exempt individuals with IDD immediately from the implementation of Phase III.  Instead, we ask for a continued commitment to offering choices to these individuals, beyond managed care, as our long-term supports and services (LTSS) further evolves.

Not only does The Arc of Illinois have serious trepidation about the ability of MCOs to provide LTSS to people with IDD, we are concerned that their role will contradict the duties of the Illinois Department of Human Services/Division of Developmental Disabilities by:

1.     Undermining the Division’s role, which is to provide “… leadership for the effective management of the design and delivery of quality outcome-based, person-centered services and supports for individuals who have developmental disabilities. These services and supports will be appropriate to their needs, gifts, talents and strengths; accessible; life-spanning; based on informed choice; and monitored to ensure individual progress, quality of life, and safety[1];
2.     Decelerating compliance with the Supreme Court’s Olmstead Decision  in which the United States Supreme Court held that “unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act.”[2]
3.     Impeding implementation of the US District Court Ligas Consent Decree[3] which provides class members with the option of community-based supports and services.

In addition to the threat of disrupting the current momentum toward system transformation, we believe that cost-cutting measures, such as those used by managed care organizations (MCOs), will not increase the quality of services/supports; in fact we believe the contrary. Not only will the use of MCOs fail to increase quality of services, it will fail to result in cost-savings above and beyond what we will see as a result of the Money Follows the Person grants used in Governor Quinn’s Rebalancing Initiative[4]. We believe the Governor’s leadership addresses necessary reforms to the Illinois IDD service system which will aid in its transformation from one reliant on costly, archaic and institutionally-based services into one dedicated to the provision of community-based services and supports and reduction of the PUNS waiting list.  The Arc contends that the current system transformation through the Governor’s Rebalancing Initiative and the existing template for system redesign, Illinois at the Tipping Point – Blueprint for Redesign in Illinois[5], requires adequate time to evolve before its outcome can be determined; these are the plans that will provide necessary reform for the disability service system in Illinois.  To introduce an additional moving part to this Initiative before it has run its course is near-sighted and irresponsible.

The Arc of Illinois is not alone in its critique and opposition to managed care long-term supports and services (MLTSS).  In an analysis of managed care in four states, Robert Gettings reported that stakeholders in those states expressed “deep disappointment with the failure of the program to promote community integration, individualization and enhanced self-direction and independence[6] (p.8, 2009)”.

A more recent study[7] from the University of Illinois at Chicago, evaluating Phase I of the ICP which included health care, revealed that consumers with physical disabilities surveyed “…expressed significantly lower satisfaction with their healthcare in general …with their primary care provider …and …medical services” as compared to baseline. However, data from consumers with IDD and mental health needs did not show any significant differences. In addition, consumers voiced the transition into ICP as “inconvenient” and “rushed”; this was intensified for caregivers of individuals with complex medical needs.

Phase II, which began in February of 2013, addresses LTSS but excludes people with IDD. Phase III, set to begin in 2014, will involve moving all direct services for individuals with IDD, including community-based and institutional residential services/supports, into one of two for-profit MCOs; Aetna and Centene-IlliniCare.

Not only do we believe that implementation is unnecessary, we believe that the medical model used in the delivery of managed care is an inappropriate service delivery model for persons with IDD. The Arc of Illinois subscribes to the more contemporary social model of disability in which disability is seen as a byproduct of environmental context.  Through the use of a variety of individualized supports and services, barriers that may limit an individual’s ability to fully access and participate in the activities of day-to-day life can be eliminated.  Independence, through the lens of the social model, becomes a function of societal and environmental support responses.

MCOs, on the other hand, typically operate under a “one size fits all” treatment approach and have little or no expertise in the delivery of direct services to individuals with IDD, many of which are specialized (e.g., person-centered planning, individual budgets, community living, employment, home-based services and day services, etc.). The daily support needs for an individual with IDD vary from day to day and from individual to individual.  There is no such thing as a “silver bullet” which enables an individual to live independently in the community; however, services provided under the social model provide opportunities for individuals to become employed, attend day programs, receive respite and other non-facility based support services.   These services do not attempt to “fix” the individual in a medical sense, but provide supportive service environments which adjust to one’s ever-changing needs, therefore enabling individuals to flourish in their communities of choice.

Managed care is primarily a cost-containment approach to managing health care expenditures. Individual choice, community living and person-centered planning are critical components of the developmental disability system and cannot be achieved with the traditional capitated (capped) managed care model implemented by for profit health insurance companies. We are concerned about the availability and quality of supports to individuals with complex healthcare needs requiring an array of specialists and intense services, often requiring technology, within the MLTSS system.  We fear that a move to an MLTSS system will reverse the system transformation Illinois is currently experiencing and lead to further service inequities as providers struggle to stay within their established capitated rate systems. 

Further, we are concerned that introduction of MLTSS to Illinois will lead to the addition of another layer of oversight, regulation and monitoring and will fail to address the ever-growing PUNS waiting list of nearly 23,000[8] Illinois residents. Community-based providers already receive sufficient monitoring from Bureaus within the Division (e.g., BALC and BQM), the Department of Public Health, service coordination agencies and accreditation bodies.  The added cost of yet another administrative level will lead to further cuts to an already lean system. This is unacceptable.  Provider agencies already receive an average of only 74-79% of agency costs from the state and have to underwrite the remaining percentage[9]. MCOs simply replicate, to a lesser extent, many of these same processes and waste scarce resources in an already financially strapped system.

The Illinois IDD service system is at a tipping point[10].  At this critical time in the evolution of the LTSS system, anything done to weaken the Division’s ability to implement its changes would be a grave mistake. Phase I of ICP has failed to show an increase in treatment satisfaction. Phase II, which began in February of 2013, addresses LTSS but excludes people with IDD. Phase II has not yet been evaluated to determine its effectiveness in the Illinois LTSS system. Phase III is scheduled to begin in 2014. It is irresponsible to proceed with the implementation of Phase III without having the results of an evaluation of the impact on the non-IDD population in Phase II.

The Arc of Illinois applauds Governor Quinn’s Rebalancing Initiative. We believe his leadership addresses necessary reforms to the Illinois developmental disability service system which will aid in the transformation of Illinois’ system from one reliant on costly and archaic institutionally-based services into one dedicated to the provision of community-based services and supports and reduction of the PUNS waiting list.  The necessary reforms to the Illinois IDD service system are being implemented. Illinois is undertaking a tremendous transformation through Money Follows the Person. Not only is managed care inappropriate for individuals with intellectual and other developmental disabilities because of its philosophical underpinnings, it’s unnecessary and ill-timed. We already have a template for system redesign in Illinois; the Illinois Blueprint for System Redesign is what Illinois residents with disabilities and their families need, not managed care.  We believe the Blueprint, in addition to the Governor’s Rebalancing Initiative, should be allowed to run their course and be adequately evaluated prior to making rash decisions about conversion to a MLTSS.

We strongly recommend that LTSS for people with IDD be carved out of Phase III of Integrated Care Program.

[1] Division of Developmental Disabilities, Mission Statement:
[4] Office of the Governor (2011, November). Governor Quinn’s Rebalancing Initiative – November 2011.
[5] Illinois At the Tipping Point – Blueprint for Redesign in Illinois Update
[6] Reassessing the Impact of Managed Care in the Developmental Disabilities Sector
[7] An Independent Evaluation of the Integrated Care Program: Results from the First Year:
[8] PUNS Overall Summary of Support Needed:
[9] State Funding of Community Agencies for Services to Illinois Residents with Mental Illness and/or Developmental Disabilities:

[10] Illinois At the Tipping Point – Blueprint for Redesign in Illinois Update

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)