Opening Remarks

IDHS Assistant Secretary Grace Hou opened the meeting, thanking everyone for taking the time to contribute to this important process. Co-chair Art Dykstra summarized a recent meeting with the Deputy Governor, Bradley Tusk. This meeting included representatives of the advocacy community as well as DSAC leadership. At that meeting the status of people with disabilities in Illinois was discussed, with an emphasis on Olmstead and moving from a facility-based to a community-based system. Mr. Dykstra relayed that Mr. Tusk was well-briefed, asked probing questions and fairly current regarding the status of the DSAC. Mr. Dykstra concluded that the DSAC has been able to improve its visibility and that he was hopeful to have an impact on the next state fiscal year budget.

The day's agenda was outlined for the group. The outcome(s) for the day were to:

  1. Define a "Working System Rebalancing Target" - The DSAC would define a systems change target for system rebalancing that will significantly enhance Illinois' compliance with the ADA and Olmstead. This rebalancing will impact all disability groups and service systems and be framed as a major, quantifiable outcome resulting from the 5 years of the DSP (beginning July 1, 2006). The "Working System Rebalancing Target" will be based on a majority consensus of DSAC members and will be used as the basis for the subcommittee discussions regarding the findings and recommendations for their respective service areas. Robert's Rules of Order were used in determining the target.
  2. Subcommittee Recommendations for Disabilities Service Plan - To prepare the foundation for the action steps to be included in the Disabilities Service Plan (DSP) the service areas outlined in the Disabilities Services Act (its proposed amendment) were organized into five (5) groups. DSAC members had identified their top three (3) choices of subcommittee. Assignments were made to each of the subcommittees to ensure adequate membership and balance. Staff with expertise in each area were assigned as resources to the discussion. A facilitator was selected for each subcommittee. Administrative staff were assigned to each subcommittee to assist in recording the discussion. The subcommittees had three (3) specific tasks to accomplish during their discussions.
    1. Each subcommittee will reach agreement on the critical steps and or systems changes that are needed to be addressed in the 5-year Disabilities Services Plan (DSP) or that support the "Working Target Level(s)", propose action steps for the DSP, and present this to the full group.
    2. The DSAC (full group) will identify the pros and cons of each subcommittee's priorities and recommendations, as presented.
    3. Consensus and outstanding issues will be recorded.

Each group's findings will be included in the draft disability services plan which will be distributed to DSAC members prior to the February meeting.

System Rebalancing Target

The DSAC spent time developing its proposed working System Rebalancing Target. After clarifying the intent of this discussion a motion was made and seconded. It was clarified that only DSAC members or their designees would be eligible to participate in the voting for this target. This excluded state staff. After discussion and additional clarification and amendments, a final motion was put to a vote. After the subcommittee meetings the motion was further amended. Using Robert's Rules of Order (abridged version) the DSAC passed the following amended motion:

"The Disability Services Plan, over a five year period beginning on July 1, 2006, would result in a voluntary 25 percent reduction in census in the following facility categories: Nursing Homes; Institutions for the Mentally Diseased (IMDs); Skilled Nursing Facilities for Pediatrics (SNF-Peds); State-operated Developmental Centers; Private Intermediate Care Facilities for the Developmental Disabled (ICF/DD), State-operated Psychiatric Hospitals and Child Care Institutions".

This motion passed by a 16 to 2 vote on December 15th. Issues of concern for those who did not support the amended motion included: concern that such a target would lead to limiting access to needed institutional services; concern that it would not be managed as a truly voluntary process for people now living in institutions; questions regarding whether the target would apply across each institutional category or if it was an overall systems target; and, that increased community opportunities did not carry the entitlement that institutional services carry. Those concerns were discussed and noted. The majority of DSAC members felt that such a target was appropriate, achievable and could be achieved using the values and principles that had been agreed upon by DSAC last spring. Further discussion at the next DSAC meeting would clarify some of the details regarding how such a performance target would be measured.

Following that meeting, the DSAC leadership sent this motion to all DSAC members who were unable to attend the meeting to offer an opportunity for them to vote on the motion. The 7 additional votes resulted in the amended motion passing by a final 21 to 4 margin.

It was noted that the DSAC would approach this target and its related Disabilities Services Plan in ways that would be coordinated with other task forces in state (i.e., the Older Adults Service Advisory Committee and the Autism Task Force, among others). Two other motions did not reach a vote, as it was agreed that they would be built into components of the System Rebalancing Target. Those two motions related to person-centered and individually directed services and the use of a "money follows the person" fiscal platform. It was agreed that the Department would distribute a summary of how "money follows the person" is used in other states to assist DSAC in determining if, and how, it may be included in the DSP. This would be available prior to the next DSAC meeting.

Subcommittee Reports

It was clarified that the subcommittee discussions need at a level of major systems changes and should involve strategic goals and objectives. Subcommittees were encouraged to keep their discussion at high system-wide tactical level and to prioritize their list of priority list of gaps and then identify the major system change objectives and recommendations which are necessary to pursue the 25 percent reduction. Finally, each subcommittee should identify the major regulatory, policy or fiscal impact that associated with each objective. In considering fiscal implications, the subcommittees should consider if a recommendation can be accomplished with existing resources without adjustment, by changes in allocations of existing resources, or only with additional resources.

The recommendations of each subcommittee are listed below. The summary of each subcommittee's discussion are attached to this report. These recommendations and issues will be integrated with other recommendations discussed earlier by DSAC as the draft Disabilities Service Plan is developed.

1. Comprehensive Evaluation and Diagnosis

A more standardized, thorough, comprehensive evaluation and diagnosis process needs to be developed. It needs to be user-friendly, efficient (all value-added data elements), cross-system (common consumer profile or demographic information, common elements although synchronized to each service system, etc.) and focused on real needs and choices. Details to consider in developing such a process should include, but not be limited to:
*Look to the Division of Rehabilitative Services process and best practices from other states.

  • Explicitly consider transportation, social, mental health, and behavioral needs in assessments and evaluations.
  • Determine and document real need and choice, to set the stage for selecting among real world choices as close to real need and choice as possible.
  • Fully implement the cross-disability needs database (PUNS for the Division of Developmental Disabilities) to create a solid needs assessment database.
  • Do not have evaluations and diagnoses completed by service providers unless under conditions that safeguard independent choice.
  • Use appropriate data from any evaluation and diagnosis instruments or databases to support applications for Medicaid or other funding opportunities.


*A number of considerations were noted by the subcommittee as further context for developing such a cross-disability approach.

  • The evaluation and diagnosis process includes eligibility determinations, but is not limited to eligibility. Eligibility is determined for community as well as institutional long-term care. Eligibility for institutional long-term care includes a recommended length, such as short term/long term.
  • There are specific standards, training, and certification for those who do the evaluation, diagnosis and eligibility that must be reviewed, updated if necessary, and standardized to the extent possible across all disability systems to maximize simplicity and interchangeability.
  • The evaluation, diagnosis and eligibility process should include a multidisciplinary meeting to include the persons who have completed the pieces of the evaluation and diagnosis. (We did not talk about the individual or their representative at this meeting, but it is likely the group would accept that.)
  • The same process that determines needs and choices also arranges whatever services the person ends of choosing.
  • Those in the multidisciplinary meeting draft an initial service plan. This initial plan is shared with the chosen service provider who responds to the proposed plan.
  • The same entity (entities) that perform the initial evaluation, diagnosis and eligibility and who understands the community alternatives also does an annual resident review and the reviews of the "short term" institutional admissions. The same evaluation of needs and choices is performed again. The entity must be adequately staffed.
  • The DON needs to be updated and have interpretations standardized.
    An electronic process and database need to replace the paper process for DOA, DD and MH.

2. Individualized Service Plan and Service Coordination

After identifying the gaps that exist in the current disability service systems, the subcommittee made the following recommendations:

  1. Independent Service Coordination, or case management that has similar person-centered performance expectations, needs to have standard elements and approaches across disability systems and be available on an ongoing basis to people who live in State Operated Developmental Centers, State Operated Psychiatric Hospitals, Intermediate Care Facilities for the Developmentally Disabled, Child Care Institutions, Skilled Nursing Facilities (including those people living in Institutions for the Mentally Diseased and Skilled Nursing Facilities for Pediatrics) as well as for those living in the community in other settings.
  2. A Single Point of Entry needs to be developed that facilitates access across disability systems.
  3. Service coordination (case management) information needs to be web-based, available across disability systems, and to an extent, accessible by people who have disabilities or are elderly.
  4. Advocacy training and peer support needs to be available to people who have disabilities or who are elderly to help them navigate the service systems. Similar training and support needs to be available to family members and/or guardians to facilitate proper, person-centered decision-making. Training of service coordination and other service staff needs to enhance their ability to support a person in the decision-making process.
  5. The menu of supports and services available in each disability service system needs to be expanded in terms of numbers and types of services available in the community. This will support more effective service coordination and planning. To the extent appropriate, HCBS waivers could be expanded (in terms of enrollment authority and menus of services or even the number of HCBS waivers) or redirected (to create more flexible, user-friendly service opportunities) or amended to support a more standardized process for accessing HCBS services across all disability services systems. HCBS waivers should also be amended or created to support "money-follows-the-person".

3. Services Available in Individual Homes, Family Homes and Alternate Residential Opportunities in the Community; and Assistive Technology and Environmental Modifications

Discussion reaffirmed that supports and services offered in the community in or in relation to a person's home are critical to their quality of life and to success in the community. Those supports and services should facilitate or maximize a person's opportunities to live in the home or residential setting of his or her choice and with people of his or her choosing. To the extent possible, supports and services should be available to allow each person to remain in their chosen home despite significant changes in need. This commitment to matching personal choice and commitment to care in the home of choice would be impacted by the availability of community and fiscal resources.

The discussion clarified that a cross-disability approach could identify three major platforms or residential settings:

  • In-home or Personal Home - Situations where a person who has a disability or is elderly lives in their own home, their family's home, or the home of a private individual. These settings are not certified or licensed and the setting is not operated by a provider agency. (Note: services provided in a person's home may be licensed or certified without the home it self requiring such certification or licensure.)
  • Licensed or Certified Home - Situations where a person who has a disability or is elderly lives in a home that is certified or licensed by a state or other municipal agency. The licensure or certification may separate the home as a "physical plant" from the services provided in the home. It may also jointly license the physical plant and the services provided within the home. It is typical for these homes to be operated by private or public agencies.
  • Institutions - By virtue of their Olmstead-related designation, the seven residential settings identified in the Systems Rebalancing Target (SNFs, IMDs, SNF-Peds, ICF/DDs, SODCs, SOPHs, CCIs) are not automatically considered community homes. However, discussion suggested that depending on size, programmatic orientation, level of personal choice and decision-making, and other factors, some residences with these designations could (maybe should) be considered as a "licensed or certified home" in the community. This would require that agreement be reached on critical elements that would have to be evident in the size of the home, how it was operated, and the level community inclusion offered to people living there.

For the purposes of identifying gaps in service and recommended systems change goals and objectives, subcommittee discussion focused on the first two types of home settings (In-home or Personal Home and Licensed or Certified Home).

Significant gaps in service were identified. They include:

  • There are inadequate amounts and arrays of all services throughout the community (to sustain significant growth in the community and to provide appropriate care for many people with more intense needs. This creates significant "access to services" barriers, especially in rural and minority communities, among others. Access is also constrained by language difficulties, based on cultural backgrounds as well as disability (deaf, blind, etc.).
  • Inadequate numbers and types of mental health services exist (in either setting).
  • Lack of parity and eligibility for services - program-based or service-based eligibility criteria currently limits what is available to people living in personal homes and also what is available for people living in some certified homes. The needed services often dictate the type of home a person has to live in.
  • There is insufficient funding by type (funding is allocated by program type which specifies the type of residence without the ability to reallocate based on demand) and volume (the community service system does not have sufficient funding).
  • There is a lack of public commitment to adequately fund community services, in terms of quantity and ensuring quality and effectiveness.
  • Access to housing funding (through IHDA and other sources) is too difficult for people who have a disability or who are elderly or their families to navigate.
  • Current restrictions on what can be done to improve owner-occupied vs. renter-occupied homes severely limits the opportunities for people to live in personal homes.
  • Current policy creates a penalty for providing natural supports (i.e., people who have a disability or who are elderly and have significant natural supports are at a disadvantage when trying to access publicly funding supports (both initially and as service need increases).
  • There is an inherent conflict between a person's access to services and choice and a corporate need to manage facilities and resources. Currently, this conflict works to the disadvantage of people who have a disability or who are elderly. A provider agency's ability to control this process (through the ability to manage its own wait list and backfills and to influence decisions about capacity and funding) is not always responsive to expressed demand.
  • Transportation within communities is inadequate (the publicly funded service is inadequate and the public transportation infrastructure does not effectively support the travel needs of a person who has a disability or who is elderly).
  • The workforce is not sufficiently skilled and/or trained to provide appropriate levels of support, skill development, treatment or service to many people who now live in the community or who would choose to live in the community in the future.
  • The general lack of housing, lack of employment, and poverty among people who have a disability or who are elderly is a major barrier to effective services.
  • The current service system (in all disability service arenas) does not effectively manage access to and length of stay for the people who need or choose institutional services. While some of this is based on the lack of adequate or effective services in the community, much of it is based on poorly managed admission criteria, lack of commitment to maintain a person in their community setting in times of crisis or change, and the lack of due diligence in managing the person's length of stay.

Recommendations:

  1. While there is a daunting specter of all of the service gaps and barriers that exist to creating adequate and effective community services in Illinois, it is recommended that this subcommittee and DSAC in general not let that keep us from moving assertively to deal with these barriers and gaps. Rather, Illinois should break the major barriers or gaps into workable-sized pieces in order to keep the task manageable and not let the overall magnitude of the initiative overwhelm the effort.
  2. The services and service array available in the community should be based on the consequences of a person's disability or age, not on the disability type. Likewise, funding should be organized around the consequences of a disability or age and not program types.
  3. Program, licensure, certification and payment methodologies should be revised to offer the full array of services (as developed as well as current) in both primary residential settings (In-home or Personal Home and (Licensed or Certified Home). A person should not have to leave their personal home to receive services unless the home itself cannot sustain the modification, adaptive technology or staff presence required to provide effective support; safety or effective service outcomes could not be provided in the home; or the cost of providing those services in the home would exceed established and publicly available fiscal parameters. This would establish a continuity of care that accommodates changes in a person's life.
  4. The service array should be organized and financed in a way that matches a person's valued outcomes (life goals), acuity levels, and support or service needs with his or her choice of community and residence. This will take a significant restructuring of the current array of supports and services to make them more flexible, accessible, properly financed (to meet a person's acuity-based needs) and responsive to expressed demand. It will also take the introduction of new or restructured supports and services that broaden the array. It should also be responsive to significant changes in a person's life or episodic needs for more intensive supports.
  5. The movement of people from institutions to the community (as described in the System Rebalancing Performance Target) should be done in ways that protect each person's choice and rights.
  6. The state should establish parameters that outline the extent or breadth of choice that a person who has a disability or who is elderly has with regard to deciding to live in a personal home or a certified or licensed home or in an institution. These parameters could list options that give a person flexibility (i.e., private contributions or other funds may be matched with public dollars to offset the higher costs that may be associated with remaining in a personal home or choosing to live in a smaller certified home; agreeing to live with an extra person in the home may decrease the per capita cost of services to allowable thresholds, etc.). These parameters should maximize choice and opportunities for integration into the community while recognizing that public dollars are limited.
  7. The state needs to restructure its rate methodologies to provide adequate funding to support effective services in the community, to create the proper incentives (or support) for a restructured and expanded array of services, and to provide the flexibility and predictability that supports a person's choice as well as provides a sound fiscal foundation for service provision.
  8. The state should work with the provider community to create and support incentives and technical assistance that assist in the transition from the current system to the rebalanced and restructured system.
  9. The state needs to restructure it Medicaid services and regulations to support the restructured and rebalanced array of community services, including eliminating current incentives for institutional placement.

4. Education, Employment, Vocational and other Day Services

The subcommittee discussions identified a number of issue areas that were critical and identified gaps or barriers and then recommendations.

Non-Integrated Educational Placement

Issues/gaps include:

  • Districts placing children with disabilities in self-contained classrooms
  • Teachers are not appropriately trained to work with children with disabilities.
  • School districts do not have intermediate options have in between for regular school and segregated education.
  • Need more leadership from state board of education.
Recommendations

The State Board of Education needs to improve its monitoring of placements of children with disabilities in segregated programs. The first step would be to conduct a statewide audit of self-contained programs to justify whether children have been appropriately placed in these types of settings.

Transition Planning

There is a legal requirement that the school district must begin planning for the transition to adulthood by the school year that child with disabilities turns 14 1/2 years of age. Issues/gaps include:

  • Many districts do not develop transition plans, even if required.
  • Many children with disabilities are unable to care for themselves after they leave school
  • School staff are insufficiently trained for transition planning
  • There are not enough employer outreach programs
  • There are insufficient community job placement experiences for youth to prepare for transition
  • There are insufficient placement opportunities in university settings.
Recommendations

Establish a clear delineation of state agency responsibilities for transition planning. The state should establish a seamless transition system. DRS should be among the collaborators. There should be a transition coordinator in each DRS office that is responsible for transition issues and who attends transition-related meetings.

Day Training

Issues/gaps include:

  • Persons with disabilities need access to services which are not linked to a segregated building. However, an alternate view expressed in the group was that persons with disabilities benefit from being together to improve socialization skills.
  • People often depend on day training as a "day care service." However, day programs often only run from 9 to 2:30. Day training should not be a substitute for the school system and should be a viable work option.
  • Services need to be individualized and should mirror a work day. The system cannot be one size fits all.
Recommendations

The system must improve the range of choice among day services. One size does not fit all. Additionally, there is currently a financial incentive for services to be provided at a single location. Day training services and funding should be tailored to the individual. Funding should follow the person (however, the level of funding needs to be sufficient). Finally, there should be an emphasis on training additional qualified behavioral specialists

Personal Income/Incentives to Work

Issues/gaps include:

  • Current income retention rules discourage persons with disabilities from working. People need an incentive to work.
  • This is national issue. The current federal definition of disability was drafted when people with disabilities never worked. Eventually we have to change the definition of disability to not make it tied to an individual ability to work.
Recommendations

The state should work with the Social Security Administration to develop pilot projects to address the issue, with the goal of taking the ability to work out of the definition of disability. Additionally, there should be work to expand health benefits for employed persons with disabilities.

Vocational Services

Issues/gaps include:

  • Services vary widely across the state. Services should be provided in the most integrated setting.
  • There is a lack of a system-wide definition of supported employment.
  • There needs to be improved training for counselors
  • More linkages should be established for sources of employment and training.
Recommendations

The state should retain vocational rehabilitation services as a separate funding stream from other vocational programs, but ensure usability and accessibility of one-stop employment centers. Vocational rehabilitation should not be combined with all job training. Additionally vocational rehabilitation should be disability specific.

Other Issues

  • Improvements must be made in assistive technology, both its accessibility and the type of assistive technologies that are available.
  • Funding should be made available for the downstate assistive technology, evaluation and training center.
  • Funding should be available for the prevention of unnecessary institutionalization. (This is an unfunded state law).
  • There are problems with services being tied to Medicaid. Medicaid is driving the availability of services. As a result, there is too much focus on what funding stream people are going into rather than the services they need.

5. Behavioral Health

Gaps and Barrier

  • There is no shared vision of behavioral health that is embraced by all disability systems.
  • The community workforce needs additional training to handle the behavioral health needs of people who move to the community or who choose services in the community rather than institutional placement.
  • The information technology and analysis capability has to be enhanced to be able to effectively project service utilization and capacity in the community.
  • The service array needs a consistent level of outcomes that are measurable across all services. The basic framework for outcome measurement should be consistent across disability service systems and similar outcomes used by different systems, when appropriate.
  • There are insufficient numbers of crisis response teams and crisis residential services.
  • There are not sufficient residential opportunities for people who choose to be served in the community (supported or supervised beds, assisted living, rental subsidies, affordable housing, etc.).
  • There are insufficient medication management services in the downstate area.
  • There are insufficient numbers of the following services:
  • o Assertive Community Treatment
    o Community Support Teams
    o Day Programs/PSR
    o IDBT Programs (EBP)
    o Supportive Employment/Supported
    o Family Psycho Education
    o Psychiatric Services
    o Illness Self Management
    o Targeted Case Management on front/back end
    o Peer Supports
    o Social/Residential Faith Based
  • Funding is inadequate for the full range of needed community services.
  • There are limitations in Medicaid funding that limit what can be done by the State.
  • There is no HCBS waiver for behavioral health.
  • Major stakeholders do not fully support the transition to community services, especially to the extent that the current power relationships or funding are disrupted.
  • There are geographic disparities with regard to access to behavioral health services as well as the availability of types of service.
  • There are multiple data systems that are not fully integrated and there is not sufficient support for collecting adequate and timely data.

Recommendations

  1. Policy, funding and service delivery decisions should be based on timely data regarding projected incidence and prevalence patterns for customers and utilization data for services.
  2. The State needs to commit additional resources to enhance its IT capability, especially as it impact cross-system data flow and tracking of the needs of people who have disabilities or who are elderly. This should be based on a system requirements analysis with an accompanying plan for implementing IT improvements that has legislative support.
  3. The State needs to focus more on "evidence-based practices" which have measurable outcomes.
  4. The State should engage the involved industries (e.g., Nursing Homes) and examine possible provider incentives, as appropriate, to facilitate the voluntary participation in the systems rebalancing target.
  5. The State should close loopholes in admission, treatment and discharge policies and/or practices to eliminate inappropriate admissions or inappropriate lengths of stay or transfers in nursing homes. This may involve legislative change as well as policy change.
  6. The State should pilot "tele-psychiatry" initiatives benchmarked in other states.
  7. The State should develop a detailed housing plan by July 1 that reasonably assures adequate housing for the number of people who may choose to live in the community through the Disabilities Services Plan.
  8. The State should investigate the geographic disparities in access to services and develop a plan to mitigate their impact to the extent possible.
  9. The State should conduct a workforce analysis that assesses its readiness to serve people in the community with best practices known to the field and develop a workforce enhancement plan that focuses on training, credentialing, qualifications, and wages.
  10. The State should create a shared (or integrated) set of outcome indicators across all disability systems that works from a common conceptual platform. This would include a set of relevant dashboard indicators for the system.

Wrap-Up/Next Steps

Following the subcommittee break-out sessions, each subcommittee reported back its findings to the full DSAC. A summary of each group's findings is provided on the previous pages. Additionally, recommendations were made for additional changes to the amended DSA language. The DSAC agreed to take these proposed changes under consideration. These changes have been introduced into legislative discussions.

At the recommendation of multiple DSAC members, it was agreed to invite members of the Older Adult Services Advisory Committee (OASAC) to present an overview of their work at the next DSAC meeting. John Eckert of the Illinois Department on Aging agreed to coordinate the presentation.

Before the meeting concluded, the following next steps were identified:

  • A draft of the DSP will be distributed to DSAC members by the end of January.
  • The next DSAC meeting to discuss the draft DSP was scheduled for February 3rd in Springfield (Note: The meeting date was subsequently changed to February 2nd)
  • The State agreed to perform research regarding a working definition of "money follows the person" and present its findings at the next DSAC meeting.