Please Note:  Since the ISSA Guidelines were disseminated to the field, there have been some important changes, of which you should be aware.  These changes were relayed to all stakeholders via Division of Developmental Disability Information Bulletins:

Bulletin
Number
Name of Bulletin
DD.11.008 ISSA Visiting Notes: Revision of Form
DD.11.010 ISSA Guidelines: Problem and Conflict Resolution
DD.12.019 Individual Service and Support Advocacy (ISSA) Review and Approval of Individual Service Plan (ISP) Form
DD.13.000 Reminder To ISSA and Service Facilitation Agencies to Present All Service Options to HBS Customers 

Responsibilities and Authority of ISSAs

ISSA agencies contract with the Department of Human Services (DHS) through the Division of Developmental Disabilities (DDD) to carry out their responsibilities.  They perform their duties under the authority of, and in compliance with, all applicable federal and state laws, rules and regulations, including but not limited to, Illinois Administrative Code Rule 120, the State's Medicaid Plan, DDD Waiver Manual and other documents.

Regulatory compliance of ISSA activity is done through monitoring by both DHS and the Department of Public Aid (DPA).  Through its contractual agreements, DHS may terminate contracts, reduce the cope of contracts or impose administrative sanctions if agencies fail to comply with applicable regulations.

ISSA agencies are given access to individual's records and to individuals when present at service provision locations for the purpose of conducting visits and reviews as directed by DHS.

ISSA agencies are independent from direct service provision and individual, guardian or family interests.  They are re to present factual information based on regulations, opportunities and restrictions with federal and state programs, strengths and limitations within specific provider programs, and best practices to all participants to promote maximum independence and self-sufficiency for the individuals involved.

Examples of resources available for advocacy services are:

  • Equip for Equality
    Chicago Corporate Office:  (800) 537-2632
    Rock Island Office:  (800) 758-6869
    Springfield Office:  (800) 758-0464
  • Office of State Guardian, Legal Advocacy Service
    Jeff Plesko, Statewide Director:  (618) 833-4897
    (regional offices are located throughout the state)
  • Local providers of advocacy services (e.g., county-based services)

Specific ISSA Tasks and General Areas of Responsibility

  1. A minimum of four ISSA visits per year, approximately one per quarter, will be conducted to each person in a waiver program and will consist of the following:
    1. One annual visit for participation in the development of the Individual Service Plan (ISP).  The person's ISP will provide documentation for this visit.
    2. One annual visit to assist the individual in completing the Consumer Satisfaction Survey, as required by DHS.  The person's Consumer Satisfaction Survey will provide the documentation for this visit.
    3. One annual visit to the day program site, if the individual participates in a day program.  The ISSA Visiting Notes will provide documentation for this visit.
    4. One annual visit to the individual's residence (whether or not it is a private home) or two, if the individual does not participate in a day program.  The ISSA Visiting Notes will provide documentation for this visit.
  2. Visits to the individual's residence will typically occur during evening and weekend hours (i.e., not during the individual's day program or working hours).
  3. All visits must occur when the individual is present at the site.
  4. Visits may be made more often than outlined above, if necessary, to resolve issues or in times of crisis.  The ISSA must document in the record the justification for the additional visit.
  5. Contact will be made with the guardian, family member or friend, if allowed by the individual, before each visit to determine if there are issues or concerns that they would suggest for consideration in the forthcoming visit.  At a minimum, the ISSA's effort to contact the guardian, family member and/or friend should consist of at least the following efforts, unless successful before the next step is needed:
    1. One telephone call during daytime hours
    2. One telephone call during non-business hours
    3. One certified letter
  6. Besides participating in the development of the annual service plan, ISSAs will review the service plan for adequacy in meeting the needs and preferences of the individual.
  7. ISSAs will also assist the individual in self-advocacy with providers of waiver services and will assist with conflict resolution.
  8. ISSAs will work cooperatively with service providers to implement improvements in the responsiveness and appropriateness of the services received by the individual according to the individual's preferences and unique perspectives.
  9. Referrals will be made to DHS involving any recurring, unresolved issues or serious problems affecting the individual's health and welfare, so that DHS can monitor or provide technical assistance as needed.
  10. ISSAs will report any allegations or observations of suspected abuse and neglect to the Office of the Inspector General (OIG).
  11. At least annually, a redetermination will be made for each individual of eligibility for waiver services.  The annual redetermination will usually be performed at the time of the ISP development; however, the redetermination may never be allowed to expire.  If the redetermination and the ISP cannot be scheduled for the same day, the ISSA must perform the redetermination before it has expired, regardless of the timing of the ISP meeting.
  12. ISSAs will maintain records including, but not limited to, an annual redetermination of waiver eligibility, an annual Consumer Satisfaction Survey results, documentation of ongoing visits to the individual and documentation to support ISSA billings.

Geographic Responsibility

Responsibility for ISSA visits will lie with the ISSA agency that serves the geographic area in which the individual's residence is located.  If the individual receiving day program services and those day program services are delivered by a provider located outside the ISSA agency's service area, ISSSA services will still be provided by the ISSA agency serving the geographic area in which the individual's residence is located.

Annual Redetermination of Waiver Eligibility

The ISSA will make a redetermination of individual waiver eligibility on an annual basis, unless there is a change in circumstances affecting eligibility which necessitates a complete review earlier, e.g., change in income, assets or living arrangement.  With the exception of developmental disability status, the redetermination must include a review of all eligibility factors.  The purpose of the review is to verify eligibility for Medicaid claiming and to establish continuing need for an ICF/DD level of service.

  1. Redetermination of Medicaid Eligibility

    The DHS local office caseworker conducts an annual redetermination of eligibility for Medicaid.  ISSAs and providers are responsible for ensuring that this occurs.

    Providers are responsible for completing the DPA-26563 to document for the DHS local office caseworker that the individual continues to meet his/her Medicaid spenddown obligation, if necessary.

  2.  Redetermination of Waiver Programmatic Eligibility

    1. Annual Redetermination

      The ISSA Qualified Intellectual Disability Professional (QIDP) is responsible for conducting an annual redetermination of the individuals' continuing eligibility for waiver claiming.  This redetermination is summarized and documented on the Redetermination of Medicaid Waiver Eligibility (1213.1).  The timeliness of the redetermination is of critical importance, as it will be monitored by HFCA, DPA and DHS Office of Developmental Disabilities (DHS Office of DD).  No redetermination may be allowed to become out of date, it must be completed within 365 days of the date on the most recent OBRA 5 or 1213.1 documenting the need for an ICF/DD level of service (sometimes referred to as active treatment for developmental disability).  Agencies may schedule a redetermination to coincide with the individual's Individual Service Plan (ISP) meeting if the ISP meeting will be held on or before the next due date for the redetermination is due.  The redetermination must then be done when due, and another redetermination could be done when the ISP is held, if the ISSA agency wishes the two events to occur at the same time. 

      ISSA agencies should remember that if provider agencies postpone the ISP to a date that is later than the redetermination date, the redetermination must still be done on or before its next due date.  The 1213.1 must be maintained in the individual record.

      The criteria for continuing waiver eligibility are the same as the criteria for initial waiver eligibility, contained in the PAS Manual and outlined in Section 420.00 of the Medicaid Waiver Manual.

    2. Process and Requirements

      The following assessments and programmatic information must be completed or reviewed in redetermining waiver eligibility:

      • Inventory for Client and Agency Planning (ICAP) or Scales of Independent Behavior (SIB):  An existing ICAP or SIB functional assessment instrument may be used if it is not more than six months old.  The redetermination date may be adjusted as needed to coordinate with the annual ICAP or SIB that is completed by the provider for persons receiving CILA or Development Training (DT) services as long as the 365-day time limit is met.  The ICAP or SIB may also be completed by the ISSA QIDP.
      • Other formal and informal assessments:  Individual redeterminations should also be based on a review of the service plan, progress toward the goals of the plan, all available case notes and individual progress reports, medical information and the individual's current status.
      • Release of Information 1214:  This form is needed to extend consent for release of individual information for Medicaid waiver purposes for a further time period.  The 1214 must also be maintained in the individual record.
    3. Notification to the Office of Developmental Disabilities

      For all individuals receiving purchase of service (POS) funded programs:

      • The preprinted Individual Database Turnaround Document (1249) must be used by the ISSA QIDP.  Code the case action with an "R" for redetermination.  Enter the date of the redetermination (from the 1213.1) as the report date.  The 1249 must be signed by the ISSA QIDP who completed and signed the 1213.1.
      • Attach both the 1213.1 and the ICAP or SIB scoring sheets, if available, to the preprinted 1249 and submit to the Office of Developmental Disabilities, Medicaid Waiver Unit.
      • Notify the individual/guardian if the determination is that the individual no longer needs an ICF/DD level of service and explain the effects, if any, on the services received and rights of the individual.  If there are any adverse effects, notification and explanation of the right to appeal must be given.
      • Terminate ISSA services for the individual.
  3. Appeal Process

    If the determination is made that the individual no longer meets the ICF/DD level of service criteria, the ISSA QIDP will provide the individual or guardian with a notice that includes the determination, whether or not services will continue, and copy of the Notice of Individual Right to Appeal (1202).

    The 1202 is also included in the required notice when any waiver service provider seeks to terminate, suspend or reduce waiver services to an individual.

    When an appeal is received by DHS, the first step for service termination, suspension or reduction is an information review and an attempt to resolve the dispute informally by DHS Office of Developmental Disabilities staff.  If this is unsuccessful or for determinations of ineligibility of or unavailability of services, the next step is a hearing by the DHS administrative law judge.

    The decision by the DHS administrative law judge will be communicated to the individual or guardian in a written notice that includes the right to appeal the DHS decision to DPA, the single State agency, the process and time line for appealing and the address to which to send the appeal.

    Details of the grounds for appeal, notification requirements and appeal process are contained in the waiver rule:  Medicaid Home and Community-Based Services Waiver Program for Individuals with Developmental Disabilities (59 Ill. Adm. Code 120.110).

Qualifications of ISSAs

  1. Accreditation

    Agencies providing ISSA must be accredited according to accreditation requirements for Individual Service Coordination agencies, as administered through the Office of Accreditation, Licensure and Certification of the Department of Human Services.

  2. Qualified Intellectual Disability Professionals

    1. Persons employed to provide ISSA must be Qualified Intellectual Disability Professionals (QIDP) as defined in Rule 115.200, "Standards and Licensure Requirements for Community Integrated Living Arrangements."  This requirement applies regardless of whether their work with ISSA is full-time or part-time.  QIDP's working as ISSAs must update their job skills and knowledge annually, including earing 12 Continuing Education Units annually in job-related training.
  3. Skills

    Skills necessary for the successful provision of ISSA include the following:

    • The ability to identify and contribute to all elements of the service planning process, including formal and informal assessment (including self-assessment); formulation of outcome goals, objectives and training methods; development of appropriate methods for determining progress; reassessment and revision of the service plan.
    • The ability to work within a team process, including such skill areas as facilitating meetings and providing follow up.
    • The ability to facilitate communication, including the ability to interpret non-verbal communication, especially as presented by persons with developmental disabilities; the ability to empathize with others' points of view, and the ability to assist others in expressing their own viewpoints and opinions.
    • The ability to assist with conflict resolution, including the abilities to facilitate communication, to develop alternative strategies and to help restore normalcy.
    • The ability verbally and in writing to present information succinctly, without bias, that addresses the level of interests of its intended audience.  This includes the ability to interpret technical information to persons inexperienced in the use of technical language.
    • The ability to identify, utilize and develop resources that are important for the DD service planning process and for DD service delivery.
    • The ability to utilize professional assessments and service reports in the determination of eligibility for services, especially services provided through the Home and Community-Based Waiver.
    • The ability to organize one's professional activities so that deadlines are met, appointments are kept and non-productive time (travel and personnel reports) is minimized.
    • The ability to maintain a professional demeanor that presents a positive approach to service issues.

Recipients of ISSA

Persons who receive ISSA will be all persons enrolled in the Home and Community-Based Services Waiver.  Among many other service profiles, this will include some individuals who:

  • are living at home and are receiving intermittent support services through Community Integrated Living Arrangement or Supported Living Services;
  • individuals in a variety of community-based residential settings, including Community Integrated Living Arrangements and Community Living Facilities;
  • individuals received a variety of day programs, including Developmental Training and Supported Employment.

For now, ISSA is only provided to individuals enrolled in the waiver, with the single exception of individuals receiving host family services.  This exception covers everyone in host family settings, including those in Home/Individual Programs and Special Home Placements.  DHS hopes to reapply for the inclusion of host family services in the waiver at a later date, when it has become clear that these services meet the criteria for inclusion.  ISSA visits are an instrumental part of that effort.  ISSA visits would continue if the host family program is again included in the waiver.

  1. Visits to Private Homes

    The State has the responsibility to ensure the general health and well-being for persons in the waiver, including individuals in their own homes; therefore, individual who choose to participate in waiver residential support programs, including Intermittent CILA, Supported Living Services and host family settings, must provide access to their homes for on-site visits.  Issues of personal preference should be respected, e.g., tidiness and clutter, but issues regarding health and safety must be addressed, e.g., decomposing food, roach infestation).

    For individuals requesting waiver-funded services, PAS Agencies must inform families prior to enrollment that PAS/ISSA visits will take place in the family homes.  Families are more likely to be receptive and cooperative if this necessity is explained to them from the beginning.  At least one annual visit by ISSA workers will be made to the individual's home.

  2. Criteria for Determining Whether Additional Visits (More than the annual four visits) are Necessary

    An additional visit may be needed if any of the following criteria is met.  The ISSA will document the need for an additional visit in Section VI, Suggested Follow Up, on the Visiting Notes summary.

    • The guardian or individual has indicated valid and significant concerns about his/her services and has requested assistance from the ISSA.
    • The service provider has requested the further involvement of the ISSA, providing examples of ways that the ISSA can contribute significantly to enhanced services for the individual.
    • As the result of the current visit, the ISSA and his/her supervisor believe that major improvement in services is necessary and that additional visits will significantly contribute to a major improvement in services.
    • The Department of Human Services has requested that the ISSA make an additional visit.  This assistance will be used in substantiated cases of abuse or neglect, among other instances.
    • The individual is experiencing significant disruptions in his/her status, e.g., potential termination from services, such as new health concerns, significant loss of supports within the community support team, increasing behavioral or emotional needs, legal difficulties, etc.
    • The individual is considered vulnerable due to severity of need, inability to communicate, inadequate services and supports, etc.; suitable services and supports are not in place to address all significant aspects of the individual's vulnerability; and, the ISSA is actively working to secure such services and supports.

    The ISSA agency may determine the best way of documenting additional visits that occur over and basic four annual visits.  The ISSA agency may wish to use the ISSA Visiting Notes, a shortened version thereof, a narrative case note, or some other means of written documentation.  In every case, the reasons for the additional visit, the process of the visit (including persons involved and issues addressed), and the results of the visit must be thoroughly documented and shared with the individual, guardian and provider.  Documentation must be retained in the ISSA's agency records, along with documentation of the annual four visits to the individual and other materials relevant to the individual's ISSA services.  In every case, the purpose of the additional visit must be identified prior to the occurrence of the visit.  The ISSA's role is not merely to observe, but to contribute to the resolution of problems.

QIDP Visiting Notes

ISSA Visiting NOtes provide a format to assist the QIDP in accurately and consistently recording information gathered during ISSA visits to individuals receiving waiver services.  The priority goal is that issues of health, safety and meaningful programming are receiving attention.  ISSA workers should use their experience to guide them in ordering priorities.

Visiting Notes do not need to be sent to DHS on a routine basis; however, ISSA agencies will forward Visiting Notes when submitting the "Referral to Department of Human Services for Monitoring and/or Technical Assistance" form to the DDD Networks.

The necessary documentation of an ISSA worker's visits to an individual for participation in development of the Individual Service Plan (ISP) will be the ISP itself, which will include a signature page of those participation in the ISP development.  The necessary documentation of an ISSA worker's visits to an individual in order to assist in completion of the Consumer Satisfaction Survey will be the completed satisfaction survey.  Visiting Notes will be used to document the other two annual visits to the individual at the individual's residence and/or day program.

When completed, ISSA Visiting Notes must be shared with the individual and/or the guardian and the waiver service providers.  Copies of the Visiting Notes must be provided on av average within seven working days following the completion of the visit.  Documentation of follow up visits provided to the individual over and above the four annual visits will also be shared with the individual and/or guardian and providers on the same basis.

The Visiting Notes are generally appropriate for use in residential and day program settings.  The following considerations will be applicable for visits to individuals at day programs and at residential settings that are private homes.  Regardless of the location of a specific visit, however, the ISSA must review with the individual, guardian and staff, outcomes for the person's entire service package and the individual's level of satisfaction with all services.

  1. For visits to individuals at day programs

    Outcome #8 - The person appears to be able to access the community with support as desired:  This may not be applicable to the day program itself, since day program activities are provided in specific settings and during specific times; however, the individual's willingness and interest in participation in the day program may be appropriately addressed in this outcome.  The ISSA may also be able to gather information from interviews and record reviews that will be helpful in assessing the degree to which this outcome is present in the individual's residential setting.

  2. For individuals receiving Support Employment

    The ISSA should discuss ahead of time with the individual and/or guardian and staff of the Supported Employment provider (and business, where applicable), the need to provide ISSA services to the individual.  This includes requirements by the State of Illinois as part of the individual's participation waiver-funded services, and observation of the individual's working conditions as part of the content of those services. As a team, persons involved should agree on the least intrusive means of obtaining the information necessary for completion of the ISSA responsibilities.  It is not necessary that the individual or staff be interviewed at the work site, but some unobtrusive observations of the work site conditions must constitute part of the data that go into the ISSA's visiting notes for the day program visit.

  3. For visits to individuals residing in private homes

    The ISSA must take into consideration cultural and economic factors that may affect particular outcomes.  Standards that apply in provider-supported residential settings may not be appropriate standards when visiting a person's own home.  For example, in evaluating the presence of Outcome #2 ("The setting of the visit appears to be safe and clean"), the ISSA should recognize that individuals and families vary from day to day in their interest and capacity to adhere to any one set of standards for what is considered "clean."  When the ISSA has questions in this area, the ISSA should address whether the individual's health, safety and well-being are supported by the setting.

    Another consideration relates to fairness.  The ISSA should consider whether everyone within the home shares the same standards for cleanliness, or whether a double standard exists, so that the individual being visited does not benefit equally from standards existing elsewhere in the home.

    Considerations similar to the above should be utilized when reviewing Outcome #12 - "The individual appears to be well groomed and appropriately dressed."

Reporting Service Hours and Payment

ISSA services will be reimbursed at an hourly rate established by DHS.  Billing and payment procedures should be followed through the Community Reporting System (CRS) as outlined in Chapter 700 of the DDD Waiver Manual.  Specific instructions are listed, including proper forms to utilize along with time lines for completion.

Billable ISSA service hours consist of time spent on behalf of the individual waiver recipient.  Examples of billable hours could include the following:

  • ISSA visits
  • Completing Visiting Notes and other required documentation
  • Contact with guardian/family
  • ISP development and ongoing review
  • Completing individual annual satisfaction surveys
  • Conflict resolution specific to the individual
  • Making referrals to OIG, DHS, etc.
  • Conducting redeterminations of waiver eligibility
  • Completion of assessments as needed (e.g., ICAP)
  • Writing termination summaries
  • Phone calls directly related to the individual
  • Travel time involving ISSA visits
  • Documentation time to support ISSA billings
  • Reporting by ISSAs to DHS

Problem and Conflict Resolution Addressing Issues, Solving Problems, Troubleshooting

  1. Foundational Principles of the Problem and Conflict Resolution Process

    The problem resolution protocol is based on five foundational principles.  These principles include:

    1. Problems are best resolved at the level from which they originate and should be elevated to higher levels of an organization only when they resist a concerted effort at the initial level of resolution.
    2. Direct, problem-solving communication must occur between those directly involved with the problem.
    3. Evaluation of the problem to higher levels of organizations should not allow those initially involved with the problem to avoid responsibility for either the problem or the resolution.
    4. Creative, collaborative solutions should not be allowed to compromise the quality of supports provided to individuals served by community providers.
    5. Communication and problem-solving activities should work to resolve the problem and help build relationships, respect and trust.
  2. ISSA Problem Resolution Protocol

    1. Step 1 - Initial Level Resolution:  Worker to Worker

      Issues or concerns, identified during the course of any ISSA contact with community providers, should initially be addressed with the person responsible for oversight of daily program implementation (agency QIDP, house lead, ISSA worker, etc.).  The ISSA and agency staff will develop an action plan, acceptable to both, for addressing the issues or concerns.

      If there is a medical or safety need, then appropriate, prompt action is required of the ISSA.  Likewise, problems that require reporting to OIG or some other regulatory body must first be handled per those requirements, and if appropriate, submitted to the dispute prevention/problem resolution process.  If the identified issues or concerns are perceived to b significantly serious, then the ISSA will immediately utilize Step 2 or Step 3.

    2. Step 2 - Second Level Resolution:  Worker to Worker and Supervisor to Supervisor

      If the matter is not resolved per the action plan, or if the parties fail to create a mutually acceptable action plan, the ISSA and/or the agency staff will immediately contact his/her supervisor to inform them of the unresolved issue or concern.  Additional efforts at resolving the issue or concern will be promptly undertaken using the following guidelines:

      • Both the ISSA and the agency program level staff person must provide a written statement of the problem, as each sees it, and their recommended solution.  These written statements will be shared with the other party prior to any additional problem-solving discussions.
      • Continuing problem-solving discussions should include all four participants - ISSA, supervisor, agency program level staff person and agency program director.
      • Copies of resolution plans will be forwarded to the agency Executive Director and the PAS/ISC/ISSA Executive Director.
    3. Step 3 - Third Level Resolution:  Worker to Worker, Supervisor to Supervisor, and Executive Director to Executive Director

      If the matter remains unresolved, the Executive Director of the PAS/ISC/ISSA agency and Executive Director of the agency will be brought into the problem-solving discussions.  Discussions should now have six participants.

    4. Step 4 - Fourth Level Resolution:  Involvement of the DHS Network Facilitator

      If the matter is not resolved within a reasonable period of time, the PAS/ISC/ISSA Executive Director will contact the responsible DHS Network Facilitator.  The Network Facilitator will conduct a fact-finding session and work with the parties to bring about a final resolution to the problem.  In the event that the parties, with the help of the Network Facilitator. are unable to reach agreement, then the Department will issue a final and binding decision.

  3. Documentation

    Documentation of the conflict resolution process will be maintained in the individual's ISSA record.  The ISSA agency will document in the individual's ISSA record that it has provided the individual and/or guardian with the information regarding the progress of the conflict resolution process.  The content of that information will be included in the documentation.

Referral to Department of Human Services (DHS) for Monitoring and/or Technical Assistance

The Division of Developmental Disabilities manages its relationships with waiver providers through eight geographic networks across the state.  Four networks are located in Metro Chicago and four networks are located in downstate Illinois.  Network staff responsible for working with individuals and providers within each network are headquartered and coordinated in Springfield and Chicago.

The Division of Developmental Disabilities has developed a referral form for use of ISSA agency staff when they are unable to resolve service issues at the local level.  This is a combined form that may be used for both ISSA and Bogard Individual Service Coordination purposes.  The formal ISSA/Bogard referral is sent to the network coordinator in either Springfield or Chicago for consideration of technical assistance and/or additional monitoring. 

The coordinator assigns each referral to the appropriate network facilitator, logs the referral and tracks the outcome of network involvement.  The network coordinator is responsible for ensuring appropriate and timely follow up.

Note:  This form is not used for suspected cases of abuse and neglect, which are reported immediately and directly to the Office of the Inspector General, which in turn notifies the Division of Developmental Disabilities for follow up on substantiated cases.

A common database is used by both the Springfield and Chicago offices so that routine reports maybe produced for monitoring and management purposes.  Reports will be shared with the Department of Public Aid (DPA).  DHS will provide DPA with ISSA referral reports when individuals are selected for DPA monitoring.

Network staff may involve the Bureau of Accreditation, Licensure and Certification (BALC), OIG or Bureau of Quality Assurance and System Improvement (BQASI), depending on the nature of the concern being raised by the ISSA, for additional investigation or monitoring.  In some cases, staff from state-operated developmental centers may be involved to provide intensive technical assistance to community-based provider agencies, especially around issues of behavior management and special medical needs of individuals.

Referrals for monitoring and/or technical assistance will be made to the appropriate Network Coordinator in the Division of Developmental Disabilities, using the form:  Referral for Monitoring and/or Technical Assistance Tool.  The following guidelines indicate situations for which such referral is desirable.  Agencies may identify additional situations for which referrals are also appropriate:

  • The individual appears to be at risk of losing one or more services.
  • Service problems identified by the ISSA in his/her visit have remained unaddressed beyond a reasonable time, despite efforts by the ISSA to assist the community support team in addressing them.
  • The ISSA has identified some serious deficits in service provision that appear to be systemic in nature, affecting more than one individual within a single agency.

Instructions for Completing the "Referral for Monitoring and/or Technical Assistance" Form

  1. Send the form to the Network Coordinator for Metropolitan Chicago to:

    Department of Human Services
    Division of Developmental Disabilities
    James R. Thompson Center
    100 West Randolph Street, Suite 6-400
    Chicago, IL  60601

    or to the Network Coordinator for Greater Illinois to:

    Department of Human Services
    Division of Developmental Disabilities
    419 Stratton Building
    Springfield, IL  62765

  2. It is not always necessary to enter names of individuals on the form or to specify site information.  If there are issues that are agency-wide and do not specifically apply to any individual or site, the sections for individual's name and/or site addresses may be left blank.
  3. If more than four people are concerned at the site, include the remaining individuals' names in the description or attach a separate page.
  4. If concerns are site-specific, do not include more than one site on a form.
  5. You may install this form in a word process and expand its length, if necessary.

Note:  All instances of suspected abuse or neglect must be reported to the Office of Inspector General, with one exception:  if the individual resides in a Community Living Facility, the report would be made to the Department of Public Health.

Referral for Monitoring and/or Technical Assistance Tool

Abuse and Neglect - Observations and Reporting

Section 6.2 of the Abused and Neglected Long Term Care Facility Residents Reporting Act (210 ILCS 30) created the Office of the Inspector General (OIG) whose responsibility is to investigate reports of suspected abuse or neglect of individuals who are current enrollees of programs under its jurisdiction.  OIG's area of authority includes any mental health or developmental disabilities facility or program that is licensed, certified or funded by DHS that is not under the jurisdiction of any other state agency.  OIG is, therefore, responsible for such investigations in all waiver habilitation settings, except Community Living Facilities, which are licensed by the Department of Public Health.

The Illinois Administrative Code Title 59, Part 50 (Rule 50 or OIG Rule) establishes specific guidelines to follow from the initial reporting of abuse and neglect through final action which would result from any subsequent investigation.  CILA Rule 115 and DT Rule 119 also contain amendments requiring reporting to OIG.

ISSA Workers are considered "required Reporters" under Rule 50 and must report all cases or suspected cases of abuse, neglect or other incidents specifically included in Rule 50.  Reports may be made to an agency's authorized representative, who would follow up according to agency procedures and report to OIG, or the ISSA worker may directly contact OIG.  If the ISSA worker notifies OIG, he/she would be considered the complainant in the case.  In either scenario, the ISSA is responsible for ensuring that OIG is contacted.  The ISSA worker should also inform the DDD Network to keep them apprised of the situation.

Rule 50 has three thresholds that, if met, would lead to report to OIG:

  1. The ISSA worker directly witnesses, abuse, neglect or the death of an individual.
  2. The ISSA worker receives a report involving abuse, neglect or the death of an individual.
  3. The ISSA worker has reasonable grounds to suspect abuse, neglect or the death of an individual

Key Definitions Contained in Rule 50

  1. Abuse:  Any physical injury, sexual abuse or mental injury inflicted on an individual other than by accidental means.  Abuse also means any physical, sexual or mental abuse resulting in a serious injury inflicted on an individual by another person who is not an employee.
  2. Neglect (paraphrased):
    • Any failure by a community agency, facility or employee to carry out required services, habilitation or treatment as ordered and that is the proximate cause of psychological harm or physical injury to an individual. 
    • Any act or omission that endangers an individual's health or safety or fails to respond to an obvious and immediate need of an individual. 
    • Any act or omission that results in an individual's absence that would cause a reasonably prudent person to suspect neglect. 
    • Any act or omission that results in an individual's sexual abuse or exploitation that would cause a reasonably prudent person to suspect neglect.
  3. Serious Injury (paraphrased): 
    • A laceration requiring sutures
    • A complete or partial fracture of any bone
    • Loss of teeth
    • Second or third degree burn
    • Severed extremity
    • Any injury resulting in a severe impairment, temporary or permanent disfigurement, threatens life, results i temporary or permanent loss of use of limb or loss of consciousness, results in a grand mal seizure or any other injury for which a reasonably prudent person would obtain medical treatment, or an injury that has significant potential for transmitting serious infectious disease.

Reporting Time Lines

  1. Abuse (physical, sexual or mental):  within one hour of discovery
  2. Neglect (with harm or endangerment):  within one hour of discovery
  3. Death (while enrolled in services and within 14 days of discharge): within one hour of discovery
  4. Serious injury: within 24 hours of discovery
  5. Injuries occurring for a third time in a 30-day period: within 24 hours of discovery
  6. Injuries in an incident involving more than two individual: within 24 hours of discovery

How to Report

  1. Office of Inspector General (OIG) hot line:  (800) 368-1463
  2. Mail or fax (in addition to phone calls):
    • Chicago OIG Office:  Madden Mental Health Center, 1200 S. First, Hines, IL  60141; Fax:  (312) 814-6508
    • Springfield OIG Office: 901 Southwind Road, Springfield, IL 62703; Fax: (217) 786-6921

Training/Technical Assistance Available from OIG  (217) 786-6054 or (217) 786-0165

  1. Training regarding identifying abuse and neglect (half-day events)
  2. Training in basic investigative skills (2-day program)
  3. Answers to questions regarding Rule 50 interpretation

Monitoring of ISSA Agencies

ISSA agencies are monitored by both DHS and DPA.  Specifically, annual reviews of the agencies' regulatory compliance are conducted by the Bureau of Accreditation, Licensure and Certification with DHS.  In addition to this routine activity, ISSAs are subject to the sample monitoring conducted by DPA and DHS's quality assurance section.  Based on the performance of each ISSA agency, DHS may terminate contracts, reduce the scope of contracts or impose administrative sanctions if an ISSA fails to comply with applicable regulations.

  1. ISSA Monitoring by Bureau of Accreditation, Licensure and Certification (BALC)

    Staff of BALC will conduct annual on-site surveys of all ISSA agencies.  Accredited agencies are granted deemed status for some standards, because those standards are surveyed as part of the required national accreditation.  ISSA providers will be n notified in writing of any deficiencies and are required to submit a plan of correction, including time frames for completion, if there are any deficiencies.  BALC staff will review the plan of correction, and if acceptable, approve the participation of the provider.  When violations occur, more frequent BALC site visits may be made.  Staff of the Division of Developmental Disabilities, including the Bureau of Quality Assurance and System Improvement (BQASI) and Network staff may assist with site visits or provide additional monitoring or technical assistance.

  2. Accreditation of ISSAs

    DHS requires all programs funded by DHS and not licensed by another agency that receive more than $20,000 per year in funding for services for individuals with a developmental disability or mental illness to be accredited by a nationally recognized accreditation body (such as CARF or the Accreditation Council).  BALC monitors ISSA agency compliance with this DHS requirement.

  3. DPA Review Process

    Each year, CPA will complete a record review of a random sample of 5% of participants.  DPA will ensure that low utilization services are included in the random sample.  In addition, DPA will randomly select one downstate provider and one provider in the Chicago Metro area per quarter for intensive on-site reviews.  A ninth provider will be chosen annually for a targeted on-site review, based on concerns found while performing other DPA monitoring tasks.  These record and intensive on-site reviews will include thorough review of the following, which involve ISSA agency activity:

    • Timeliness of waiver redetermination
    • Quality and accuracy of Individual Service Plans
    • Evidence of individual's rights, satisfaction and ability to make choices
    • Review of ISSA visits and reports

    The results of these reviews will be summarized with other DPA findings and will be forwarded to DHS for follow up action.  The DHS BQASI will ensure appropriate corrective action plans are developed and implemented.  This activity is subject to tracking and follow up monitoring by DPA.

  4. DHS Random Monitoring Activities

    DHS  BQASI will conduct joint random on-site reviews of different individual cases and issue separate findings.  Written plans of correction will also be required as a result of the DHS case reviews.  The BQASI  will track the plans of correction and will report to DPA on the status of these cased quarterly.

  5. Maintenance of Records by ISSAs

    The ISSA agencies are to maintain paper records for review by monitoring agencies of the following information:

    • Annual redeterminations of waiver eligibility
    • Annual assessment of satisfaction and ability to self-advocate
    • Document of ongoing visits to the individual at least 4 times per fiscal year and more often, if needed
    • Documentation to support ISSA billings
    • Documentation of DHS payments to the ISSA agency
    • Audit report and consolidated financial report

Visiting Notes Instructions and Format

The following section provides instructions in addition to those that appear on the form that will be helpful to the ISSA in completing the record of the ISSA's visit.

  1. Identifying Information

    Section I. Major Issues to be Addressed During These Visits

    The QIDP will provide a brief synopsis of the reason the person is receiving an ISSA visit.  This will provide information on the background associated with the visit, providing a context within which the Visiting Notes can be understood.  If it is one of the annual routine visits that every individual is to receive, that can be noted here.  At times, DHS, providers or guardians may request that ISSA visits include special attention to a particular issue.  That information can be included here.  Some examples might be:

    • First ISSA visit for the year - routine
    • DHS has requested ISSA for this individual, in response to a call from the provider who was seeking technical assistance due to reported behavioral difficulties.
    • The individual's guardian has noticed a change in the individual's demeanor (angry and withdrawn) and requested ISSA services to help identify the cause.
    Items to be Identified Explanation
    Name of person visited Supply the name of the person being visited
    Date of Visit Supply dates on which visits took place
    Time of Visit Supply beginning and ending time for visit.  If the visit occurred at more than one time, supply additional information in the margin
    Location of Visit Check whether the visit occurred at the individual's residence, day program site or other location.  If other location, indicate the location and why it was used.
    Name of Agency Supply name of agency providing residential services.  If day program only, supply name of day program agency.  If enrolled in an SLS, supply name of agency employing team leader.
    Executive Director Supply name of agency Executive Director
    Agency Address Supply agency address
    Address of Site Supply address of site at which the individual was visited
    Residential Program Type Supply information only if a residential service is being provided, i.e., CILA, Intermittent CILA, CLF, SHP, H/IP or SLS.  Draw a line if individual is not receiving DHS-funded residential services (e.g., if the individual is only attending a day program)
    Number of Persons Living in the Home Supply total number of individuals with a disability who live in the unit occupied by this individual.  Include individual being visited in the total number.  If the unit is part of an apartment building or duplex, do not include individuals living in other units.
    Day Program Type Supply type of day program being provided through waiver funding, e.g., such as Developmental Training or Supported Employment, etc.  If not day program is being provided through waiver funding, draw a line
    Name of Guardian Supply the name of the individual's guardian.  If there is no guardian, write N/A
    Name of ISSA Worker Supply name of QIDP who is providing ISSA services to the individual
    ISSA Agency Supply name of agency that employs QIDP providing services to the individual
    Network Supply the name of the DDD Network in which the site being visited is located.
  2. Section II.  Sources of Information Utilized During the Visit

    This section provides a listing of the various persons interviewed and documents reviewed by the ISSA QIDP in order to complete his/her visiting notes.  It is a record of the resources utilized by the ISSA QIDP in order to arrive at his/her conclusions, which are recorded in other parts of the visiting notes.

    Information
    Needed
    Explanation of Information Needed
    Date Supply the date at which the person was interviewed and/or visited or the document was reviewed.
    Method Indicate whether the interview or review were done by person-to-person interview, by telephone contact, by visiting and observing the person, or by a document review.  These suggestions are not exhaustive.  If other means were utilized to obtain the information, they should be indicated here also.)
    Person Interviewed or Visited or Document
    Reviewed
    • For persons, supply the name of the person interviewed or visited.  This would include not only the person receiving ISSA services, but also the guardian, staff members of provider agencies, family and friends, etc.
    • For documents, supply the name of the document.
    Site Indicate the QIDP's location when the interview was conducted or the document was reviewed.  If the interview was by telephone from the QIDP's office, a suitable note would be "ISSA office."
  3. Section III.  Interests of Guardian/Family/Friends

    This section provides a space for entering information about specific interests, concerns, or issues that the guardian, family and/or friends have expressed as significant to the ISSA visit.  Contacts with family and/or friends shall be made only with the consent of the individual (when guardianship is not applicable) or guardian.  Guardians must be contacted prior to site visits.  See Specific ISSA Tasks and General Areas of Responsibility for guidance.

    Guardians must be asked if they have any issues with service provision or special areas of concern.  It is not intended that guardians be asked a standard list of questions corresponding to the outcomes on a routine basis; however, a few specific questions, varied each time, may aid the ISSA in obtaining useful comments from the guardian.

  4.  Section IV.  Review of Desirable Outcomes

    The Review of Desirable Outcomes section provides space for the ISSA QIDP to record notes that indicate whether each of 19 different outcomes is present.  Details or examples to indicate the reasons for each determination should be included here.  Notes should emphasize objective information, i.e., things observed or read.  Subjective information reported by others is appropriate for inclusion, especially when expressed by the individual and guardian.  Each of the 19 outcomes should be addressed.  If, for a particular outcome, there was an insufficient opportunity to assess the presence of that outcome, a note should be entered to explain what obstacles prevented the QIDP's evaluation of that outcome.

  5. Section V.  General Observations/Comments/Unusual Circumstances

    As the instructions indicate, this space is for overall impressions and summary information by the ISSA.  Special efforts or achievements by the person being visited, the team or other entities might be commended here, or in other parts of the visiting notes.  This section may also be used to record information received from the person being visited, the guardian or family members, staff persons, other support persons, peers, etc., if that information is deemed pertinent to the visit and is not noted elsewhere.

  6. Section VI.  Suggested Follow Up

    Refer to Guidelines for Additional Services for further criteria useful in determining whether additional ISSA visits or referrals to the DHS Network for monitoring and/or technical assistance are indicated. 

    "Is Follow-Up Action Needed?  _____ Yes _____ No"

    The answer to this question will be based on information gathered in the preceding sections of the Visiting Notes.  Follow up may include suggestions for the Community Support Team, such as modification of the Individual Service Plan or the securing of additional assessments.  It may include matters to be taken up with the Network such as a request for monitoring and/or technical assistance.  It could also contain a notation regarding any referral made to the Office of the Inspector General.  It may include action needed by persons other that the ISSA.  If "Yes" is marked, the ISSA worker should list the suggested action, the person responsible (including affiliation) for taking the action, and the suggested target date for the action in the appropriate boxes contained in this section.

  7. Section VII.  Signature of the ISSA

    This section should be signed and dated by the ISSA QIDP when the Visiting Notes are completed.  Copies of this completed form are to be given to the agency, the individual and the guardian.