2008 PROGRAM REVIEW AND EVALUATION

SERVICE DESCRIPTIONS

Persons with developmental disabilities are those who have mental retardation or a related condition. Mental retardation refers to significant sub-average general intellectual functioning existing concurrently with deficits in adaptive behavior; it must be in evidence before the age of 18. Related conditions may be attributable to cerebral palsy, epilepsy, autism, or any other condition that results in impairment similar to that caused by mental retardation and requires treatment or services similar to those required for those persons. Related conditions must be in evidence before the age of 22, be expected to last indefinitely, and result in substantial functional limitations in three or more of six major life activity areas. These major life activity areas include self-care, language, learning, mobility, self-direction and capacity for independent living. In order to be clinically eligible for most services from the IDHS' Division of Developmental Disabilities (DDD), individuals must also require Active Treatment for the developmental disability. Eligibility screening is provided by local Independent Service Coordination agencies funded by the DDD.

Funding for clinically eligible individuals who are seeking services is determined by the DDD on a case-by-case basis, according to priority population criteria, with the goal of first serving persons with severe needs who have the fewest supports already available.

The purpose of Department-funded support services for persons with developmental disabilities is to maximize informed choice in services and supports and independent living for persons with developmental disabilities, offer and link these individuals to appropriate services and supports in the community, thereby enhancing their independence in the major life skill areas and ultimately allowing them to continue to reside in their home communities and preventing unnecessary institutionalization.

IDHS is committed to ensuring that local service providers make available to individuals and their families a full array of quality, outcome-based, person- and community-centered services and supports. Personal outcomes include: being active and valued participants at home, at school, at work, and in the community; having lasting and meaningful relationships with family, friends, and neighbors; having informed choice about his/her life and determining where and with whom to live, work, and socialize; developing and exercising one's own abilities and gifts; and having personal security and individual rights. It is essential that support services are functional, outcome-oriented and tailored to the service needs of the individual.

The statutory bases for developmental disabilities services are the DMHDD Act (20 ILC 1705/1502) and Community Services Act (40 ILCS 30/3).

Adult residential services are provided primarily in Community Integrated Living Arrangements (CILAs), Intermediate Care facilities for Persons with Developmental Disabilities (ICFs/DD), and State-Operated Developmental Centers.

Day and Vocational Services, including developmental training, sheltered employment, and supported employment, are provided by community-based agencies and organizations.

They are designed to enhance a person's skill levels in the major life areas and work-related activities.

Individual and Family Support Services enable people with disabilities to continue to reside in their own or family homes while receiving needed Department-funded support services, such as Respite, Client and Family Support, Home-Based Support Services, and other related In-Home Support Services.

Independent Service Coordination promotes service accessibility and continuity of care, and seeks to maximize an individual's potential for independence, productivity and community integration. An independent service coordinator (as a function of Pre-Admission Screening, Bogard Service Coordination, Individual Service and Support Advocacy, or Generic Independent Service Coordination) ensures the completion of comprehensive assessments, development and implementation of the habilitation plan, linkage to needed support services in the community, and provision of on-going service monitoring and advocacy on behalf of individuals.

The Prioritization of Urgency of Need for Services (PUNS) database was created in November of 2004, pursuant to legislative mandate. This database is a record of adults and children with developmental disabilities who are seeking new, different, or additional DDD services within the next five years. In April 2008, the Division announced that it would also begin using PUNS as a waiting list for services. Prior to this change, the information was used for data purposes only and had no connection to determining who would receive services. The PUNS database collects information on the five-year service outlook for these individuals.

PUNS information is updated at least annually, more often if the individual's situation changes. Aggregate data from the PUNS system, preserving confidentiality, is available to policymakers for short-term and long-term planning for developmental disabilities services and funding.

In August 2006, the Division of Developmental Disabilities, in partnership with the Governor's Office, launched a statewide outreach campaign to increase enrollments in the PUNS database. The outreach effort launched the website www.dd.illinois.gov and the toll-free number 1-888-DDPLANS or 1-866-376-8446 (TTY). These innovative resources provide  information and support to individuals with developmental disabilities and their families as well as contact information for the local coordination agency serving their area. The outreach effort also included public service announcements, brochures, posters and flyers highlighting Developmental Disabilities services and ways to contact local coordination agencies.

The Division of Developmental Disabilities serves approximately 45,000 individuals. The chart below provides details about the number of individuals receiving the categories of services described above. The reader should note that individuals can and often do receive services in more than one category.

FAMILY IMPACT

The Division of Developmental Disabilities (DDD) serves people with developmental disabilities i.e., those persons who have mental retardation before the age of 18 or a related condition that is manifested prior to the age of 22 and who require active treatment for their developmental disability. (Related conditions may include cerebral palsy, epilepsy, autism, or other conditions that are similar to mental retardation. Related conditions must be likely to continue indefinitely and result in substantial functional limitations in three out of six major life activity areas. These major life skills areas include self-care, learning, mobility, language, self-direction and capacity for independent living.)

For children ages 3 years old through age 21, two new children's Medicaid Waivers were developed and implemented July 1, 2007. One waiver provides supports for eligible children with developmental disabilities in their own homes, during non-school hours, in order to strengthen and support family resources and to prevent the need for children to move to Intermediate Care Facilities for Mental Retardation. (In Illinois, these are licensed as Long Term Care for persons under 22 Facilities).

For eligible children for whom in-home supports are not successful or not possible, the second children's waiver provides residential services in smaller children's group homes rather than in Long Term Care for persons under 22 Facilities.

These children's waiver programs are limited in capacity according to the amount of funding available each year to support them. Funding will continue for eligible children whose families seek services in Long Term Care Facilities for persons under 22 and who are entitled to receive those services.

Other programs to support children with developmental disabilities and their families include Respite Services (both in home and out of the home); Independent Service Coordination, provided on a limited-time basis and focusing on identifying needs and potential solutions; and a small Family Assistance Program, which provides a monthly stipend to families selected through a computerized random selection process and which is intended to support the needs of children with developmental disabilities.

For eligible adults who are still living at home with other family members and do not require 24 hour nursing services, the DDD, through its adult Home and Community Based Services Waiver, provides Independent Service Coordination services and in-home supports for day program, personal supports, respite, transportation, nursing, therapies, adaptive equipment, and home and vehicle accessibility modifications. These services allow adults with developmental disabilities to live with their own families in natural family settings and to receive the supports that promote community integration and family well-being. For adults with developmental disabilities who are living at home and who are not participating in the adult DD Waiver services, respite is available through a number of community developmental disabilities service agencies. All of these programs are available on a limited basis, according to the amount of funding available each year to support them.

NEED AND POPULATIONS SERVED

Need - There are over 16,000 persons on PUNS, the DDD waiting list that records the service outlook for persons with developmental disabilities. All of these persons either have been determined to be clinically eligible as persons with developmental disabilities or there is a reasonable basis to believe they will be determined to be clinically eligible when the determination process is conducted. Some of these persons are already receiving some developmental disabilities services. All of these persons have expressed a need for new, additional, or different developmental disabilities services. This number will continue to grow, as outreach efforts, word of mouth, and referrals bring other potential customers to the local DDD Independent Service Coordination agencies for enrollment in the database and for other services.

Populations to be served - For Pre-Admission Screening (PAS)/Service Coordination, individuals to be served are children and adults who are residents of Illinois who may have a developmental disability, and the families, friends, and others who care about them. For the other services, individuals to be served are individuals who have mental retardation or a related condition. For waiver services and Intermediate Care Facilities for Developmental Disabilities services, the individuals will meet the clinical eligibility criteria set forth in regulations for those services. For DDD waiver services, they will also meet priority population criteria set forth in the waivers and in the DDD contracts with service providers.

DEVELOPMENTAL DISABILITIES SERVICE DATA

Community Health
?Program SFY08 Actual SFY09 Estimated SFY10 Projected
Persons Served
Residential Services 18,972 19,000 19,000
Day/Vocational Services 26,561 26,500 26,500
Support Services 20,263 20,000 20,000
PAS/Service Coordination 23,937 24,000 24,000
Performance Measures
?Performance Measures Description SFY08 Actual  SFY09 
Estimated
SFY10
Projected
Persons receiving developmental disability services as a percent of the estimated number of persons with a diagnosis of a developmental disability. 18.8 20 20
Percent reduction of persons served in State Operated Developmental Centers (SODCs). 6.54 8.01 6
Number of individuals served in waiver settings. 15,947 16,500 16,500
Number of individuals served in private Intermediate Care Facilities for Persons with 6,620 6,500 6,370
Mental Retardation (ICF/MR), including Skilled Nursing Facility/Pediatrics.
Percent of all DD Medicaid & ICFDD claiming as a percent of DD community ICFDD spending. 81.5 82 82

STRATEGIC GOALS, OBJECTIVES AND ACCOMPLISHMENTS SFY 08

Priority II - Independence

Collaborate with human service agencies to effectively help individuals with disabilities to maximize independence.

Strategic Goal/Initiative 16

Ensure participation of people who have developmental disabilities in service planning and delivery (Division Goal II.3).

Objective(s)

By April 30, 2008, convert current Waiver authorization process from provider-based requests to selection from the Prioritization of Urgency of Need for Services database.

Accomplishment(s)

The Waiver authorization process was converted to a system based on selection from the Prioritization of Urgency of Need for Services database effective November 2008. The new selection process by which individuals are selected to receive services is transparent and ensures that people in similar situations have an equal opportunity to receive services, regardless of how or where they come into the system.

Strategic Goal/Initiative 17

Ensure service coordination/case management outcomes for persons with developmental disabilities relate to individual needs and preferences (Division Goal II.2).

Objective(s)
  • The timeframe for enhancing independent case management services through the development of a rule to govern operations was extended to October 31, 2009.
  • By October 31, 2008, enhance independent case management services throughout the delivery system by developing a rule to govern operations.
  • By November 30, 2008, submit a budget initiative for a standardized, statewide case management system.
Accomplishment(s)
  • A Waiver Ad Hoc Committee of the Statewide Advisory Council was formed and has been meeting to discuss independent case management services and what changes should be made at this time. Input from stakeholders will continue as changes are adopted.
  • A budget initiative was submitted, however, it was not approved due to the state's fiscal crisis.
  • The Administration asked the Division to include a case management system development with the new multi agency  framework.

Strategic Goal/Initiative 18

Improve availability of adequate and appropriate resources for persons with developmental disabilities in communities (Division Goal I.3).

Objective(s)
  • By June 30, 2008, expand Waiver services to 1,000 additional individuals (800 using Hospital Tax Revenues funding and 200 using DD Trust Fund dollars) increasing the number of individuals in all DD Medicaid waivers to 15,700.
  • By June 30, 2008, transition 151 individuals from SODC's to CILA reducing the statewide SODC census from 2539 to 2388 (a 5.95 percent reduction.)
  • By June 30, 2008, improve statewide staffing rations at SODC'c from 1.8 to 2.0.
Accomplishment(s)

Waiver enrollments have been expanded to approximately 16,500 individuals as of the beginning of March, 2009. Hospital Tax Revenues, as well as federal matching funds, were invested to serve additional people selected from the Division's waiting list, in addition to those in crisis situations. These individuals include children with significant behavior and personal care needs, young adults aging out of the public school system, older adults with aging care givers, etc.

The Division exceeded its FY 08 goal of assisting 151 individuals to transition from SODCs - 160 individuals actually moved to alternative community settings. As of the beginning of March, an additional 96 individuals have moved from SODCs with more moves planned, keeping the State on target to reach its FY 09 goal of 190.

Priority III - Health

Collaborate with human service agencies to improve the health and well-being of individuals and families and provide effective treatment to individuals in need.

Strategic Goal/Initiative 37

Upgrade program monitoring and licensure processes to ensure activities effectively safeguard a person's health, well-being, safety and quality of life (Division Goal IV.1).

Objective(s)
  • By March 31, 2008, reorganize Quality Assurance activities within the Division of Developmental Disabilities.
  • By April 30, 2008, establish a statewide Quality Committee (of the SAC).
  • By July 1, 2008, enhance mortality review processes with oversight in all State operated or licensed/certified DD settings.
  • By October 31, 2008, improve monitoring and enhance accountability of medication administration in private 16-bed ICF/DDs and residential waiver settings.
Accomplishment(s)

The Quality Assurance activities within the Division of Developmental Disabilities were reorganized and the new Bureau of Quality Management was created. It developed a multiyear work plan. The statewide Quality Committee of the Statewide Advisory Council was also formed. Improved monitoring and enhanced accountability of medication administration in children's waiver residential setting was accomplished.

Mortality reviews of all State-operated and licensed/certified Developmental Disabilities settings continue. The Division is working with Legal and the Office of the Inspector General to explore new approaches to enhancing mortality reviews.

DIVISION GOALS AND OBJECTIVES SFY 09 - 11

Priority II - Independence

Collaborate with human service agencies to effectively help individuals with disabilities to maximize independence.

Strategic Goal/Initiative 17

Ensure service coordination/case management outcomes for persons with developmental disabilities relate to individual needs and preferences (Division Goal II.2).

Objective(s)
  • By March 1, 2009, implement crisis management services, providing consultations and technical assistance to assist private human service providers in meeting individual needs.
  • By July 1, 2009, fully implement crisis management teams throughout the DD system of care.

Strategic Goal/Initiative 18

Improve availability of adequate and appropriate resources for persons with developmental disabilities in communities (Division Goal I.3).

Objective(s)
  • By June 30, 2009, transition 220 individuals from SODCs to CILA reducing the statewide census from 2,416 to 2,196.
  • By June 30, 2009, implement the Money Follows the Person Grant, as it relates to individuals residing in ICFs/MR, reducing ICF/MR census from 6,600 to 6,580. (If increased target is approved by CMMS, adjust to reflect 225 goal over 5 years.)
  • By June 30, 2009, improve statewide staffing ratios 1.96 to 2.05.
  • By June 30, 2009, increase by .5 percent the amount of all DD Medicaid and ICFDD claiming as a percent of DD community ICFDD spending, from 81.5 percent to 82.0 percent.
  • By June 30, 2009, expand Waiver services by 553 additional individuals using DD Trust Fund dollars, increasing the number of individuals in all DD Medicaid waivers from 15,947 to 16,500.
  • By June 30, 2009, decrease by 120 the number of individuals served in private Intermediate Care Facilities for Persons with Mental Retardation (ICF/MR), including Skilled Nursing Facility/Pediatrics from 6,620 to 6,500.
  • By December 31, 2009, submit to CMMS a new Medicaid waiver for people with developmental disabilities allowing greater flexibility in service delivery including the Individual Service Option (ISO).
  • By June 30, 2010, improve statewide staffing ratios at SODC's from 2.05 to 2.15.
  • By June 30, 2011, increase by 1.2 percent annually the percent of persons receiving developmental disability services from 18.8 percent to 20.0 percent in FY 09, 21.2 percent in FY 10 and 22.4 percent in FY 11.

Priority III - Health

Collaborate with human service agencies to improve the health and well-being of individuals and families and provide effective treatment to individuals in need.

Strategic Goal/Initiative 37

Upgrade program monitoring and licensure processes to ensure activities effectively safeguard a person's health, well-being, safety and quality of life (Division Goal IV.1).

Objective(s)

By January 1, 2009, establish person-focused quality indicators and benchmarks to be tracked across the service delivery system.