H.R. 1117, Cross Agency Coordination Task Force

HOUSE RESOLUTION 1117

CROSS AGENCY COORDINATION TASK FORCE

December 16, 2009
Members included:

  • Adjoja Blalock -- Department of Human Services, Division of Mental Health, Child and Adolescent Services, Coordinator Special Project
  • Terry Braidwood - Department of Human Services Division of Developmental Disabilities
  • Marva Campbell-Pruitt - Department of Human Services Division of Rehabilitation Services
  • Terry Carmichael - Community Behavioral Healthcare Association of Illinois
  • Melanie Fleenor - Illinois State Board of Education
  • Brenda Hampton - Deputy Director Systems Rebalancing, Division of Mental Health
  • Elizabeth Hanselman - Illinois State Board of Education
  • Robert Holladay - Department of Human Services Division of Developmental Disabilities
  • Amelia Jumper - Comprehensive Behavioral Health Center
  • Carolyn Kopel/Georgia Winson - Hope Institute
  • Dr. Holly Novak -parent
  • Viviana Ploper - Regional Director Community Counseling Centers of Chicago(C4)
  • Larry Small -Department of Children and Family Services
  • Kris Smith - Department of Human Services, Division of Rehabilitation Services
  • Judy Sunder -Parent
  • Brenda Yarnell - United Cerebral Policy


Introduction

The State of Illinois has various agencies that address the needs of youth with a developmental disability or mental illnesses. Many of these agencies have adopted a different age by which the youth in their programs transition to adult services. Due to this variation, there is a need for program coordination of transition services. This lack of uniformity in the transition age between agencies results in disparities in services provided to youth and their families and confusion among beneficiaries of State programs and services.

The Cross Agency Coordination Task Force was established by way of HR1117 to study "the implementation of a uniform age by which youth with a developmental disability or mental illness age out of programs administered by those agencies." This document contains an examination of ways to improve transition services to individuals diagnosed with a developmental disability or mental Illness by studying the current literature on transition.

Effective planning for youth and young adults who have a developmental disability and/or serious mental illnesses and who are in various transitional stages in life is contingent on three essential elements: communication, collaboration and commitment across the array of state and local level service systems' partners. For such efforts to exist and ensure proper guidance for families, the right service resources, staff planners and advocates must work together under a common person-centered agenda.

Vision Statement

It is the vision of this task force that the State of Illinois ensures that adolescents and young adults who have been clinically diagnosed with a developmental disability and/or mental illness, beginning at 14.5 years of age are offered coordinated, multi-disciplinary transitional support and service planning through each critical life juncture until such time that educational services are exhausted and/or continuing to 22 years of age, to assist them (and their families) in making a seamless and successful transition to adulthood.

Statement of Need

Research has shown that young adults with a developmental disability and/or mental Illness may often experience less successful transition into adulthood despite current efforts of multiple agencies. For youth and young adults who have aged out:

  1. 80% of those with disabilities want to work, yet 76% are  unemployed;
  2. Twice as many are likely to drop out of school compared to non-disabled peers.
  3. Many experience higher rates of unemployment, even with a  high school diploma;
  4. Many are less likely to participate in secondary educational programs;
  5. Once in the work force, they often receive lower wages;
  6. Many have more difficulty in living independently and in building supportive relationships.
  7. They are three times more likely to experience an incarceration.

The Illinois Interagency Coordinating Council (IICC) established in 1990, has been examining issues related to transition. The IICC 2007-2008 report  stated that there is a continued need for employment, transportation, housing, life skills, and secondary education for transition aged youth with disabilities.

Literature supports that providing age and developmentally appropriate services improves the success rate for youth with a developmental disability/mental illness to successfully enter into adulthood. Despite this acknowledgement, barriers exist to assure that youth receive effective seamless services at critical junctures in their lives.

The Cross Agency Coordination Task Force believes that there are many reasons why seamless and successful transitioning efforts are not succeeding. These include:

  1. Educational services are entitlements whereas many  developmental disability services are not;
  2. The three divisions under the Illinois Department of Human  Services: Developmental Disabilities, Divisions of Mental Health  and Rehabilitation Services, do not receive specific funding to  provide services for the young people aging out of educational  services;
  3. Lack of a shared vision due in part to the different service  expectations of state agencies;
  4. Inadequate coordination between the multiple state agencies which  serve transition aged youth with a developmental disability/mental  illness;
  5. Inadequate monitoring of existing transition policies written for use  by the educational system;
  6. Lack of uniformity in transition ages across the Departments  (see chart below):
Agency Legislatively Mandate to Provide Transition Services  Begin Age for Eligibility of Transition Services End Age for Eligibility of Transition Services
Department of Children and Family Services  no 14.5 Up to age 22
Department of Human Services, Division of Developmental Disabilities no Individualized according to the service plan Up to age 22
Department of Human Services, Division of Mental Health no 14 18
Department of Human Services, Division of Rehabilitation Services  no 14.5 Once youth graduates from high school
Illinois State Board of Education yes 14.5 Day before the student's 22nd birthday
  1. Parents knowledge and skills to negotiate transitional services may  be limited;
  2. The knowledge base of school personnel regarding transition  requirements of students with a developmental disability/mental  illness is variable and non-uniform;
  3. Key community participants including educators, mental health  professionals, current and  future  service providers,  representatives from community colleges, vocational rehabilitation  programs and community businesses may not have adequate  knowledge, time, skills, or funding;
  4. Inadequate communication, collaboration and/or coordination of  transition planning between schools and community based  agencies;


The Cross Agency Coordination Task Force offers the following recommendations to address these concerns:

  • Recommendation 1: DCFS' and DHS' policies and regulations should support full availability of ISBE transition services for those DCFS wards and/or DHS service recipients who are eligible for ISBE transition services and who wish to receive ISBE transition services, from the age of 14.5 years up to the age of 22 years, regardless of the individual's residential service arrangements. If any current DCFS or DHS policies or regulations create obstacles to this recommendation, those policies or regulations should be changed.
  • Recommendation 2: DHS, ISBE, and DCFS shall identify and share evidence informed practices that recipients have identified as successful and share these among stakeholders.
    Recommendation 3: Increased interagency coordination and improved accountability should be achieved by funding a transition specialist through DHS, DCFS and ISBE whose specific focus is on transition outcomes.
    Recommendation 4: DHS, DCFS and their designated contracted vendors shall make available to parents and/or guardians of youth who are DHS service recipients or wards of DCFS, and who have been identified by ISBE for transitional services funding, a Transitional Service Resource Handbook and a 1-800 live line.
  • Recommendation 5: DHS, DCFS, and ISBE shall create a transitional service Ombudsman to increase parents "knowledge of transition services."
    Recommendation 6: Universities, in their role in workforce development, shall update and expand their curriculums in: education, special education, speech, Occupational Therapy, Physical Therapy, rehabilitation, psychology, and social work to better facilitate transition plan development.
  • Recommendation 7: DHS and DCEO (Division of Commerce and Economic Opportunity) shall set, and aggressively pursue, a public goal that engages the business community for improvement in the number of persons with disabilities who gain employment.
    Recommendation 8: Children's mental health needs should be identified early so that interventions can be provided sooner than current practices to improve their transition to adult living.
  • Recommendation 9: The Illinois Interagency Coordinating Council (IICC) should be the designated entity to discuss the recommendations of this report and will report on its status in its annual report to the General Assembly.

In conclusion, through discussion and extensive review of the literature and research, the task force has identified a lack of consistency between policy and practice; a lack of coordinated multi-disciplinary interaction; and significant funding deficits across multiple organizations and agencies as primary barriers to effective transition services. It is essential for youth to have a clear path to adulthood as they move from school entitlement programs to community based services with eligibility restrictions and limited funding. It is the opinion of the task force that the needs the State of Illinois' transition aged youth and young adults who have developmental disabilities and mental illnesses will best be achieved with adequate resources to support transition specific services to prepare this audience in maximizing their individual pursuits into adulthood.

APPENDIX A

Transition Age Grid, DHS--Division of Developmental Disabilities

Service Areas Brief Description  Minimum Age for Eligibility Maximum Age for Service Delivery Are ISBE Transition Services up to Age 22 Permissible Under Current Age Limits and Policies if Individual Desires Them?
Service Coordination Provides education, referral, follow-along, and linkage services for children and adults with Developmental Disabilities, including participation in planning for adolescents aging out of public schools. No minimum age Note: if under age 3, family is referred to Early Interv. (EI) services.  No upper limit Yes
Home-Based Support Services-Children Provides children with DD supports to remain at home in the community with their families at a semi-independent level. Services include counseling, community orientation, life skills and behavioral training. 3 years old Up to age 22 Yes
Home-Based Support Services-Adults Provides adults with DD supports to remain at home in the community with their families or on their own at a semi-independent level. Services include counseling, community orientation, transportation, life skills and behavioral training.  18 years old No upper limit Yes
Residential Services-Children Provides structured residential environment for child. and adol. who can't reside in own home. Resid. svcs. are licensed by DCFS and funded via DDD. Individuals must be in school program approved by ISBE. 3 years old Up to age 22 Yes
Residential Services-Adults Provides both structured and flexible residential setting for adults with DD in facility-based or community environments. Includes State-Operated Dev. Centers (StOps-certified by IDPH), Intermediate Care Fac. for Indiv. with DD (ICFs/DD-licensed and certified by IDPH), and Comm.-Integrated Living Arrangements (CILAs-licensed by DHS-DD). 18 years old No upper limit Yes
Day Program (Adults)  Programs for indiv. with DD include: Developmental Training (DT-acquisition of basic living skills, attending skills, and vocational skills), Regular Work/Sheltered Employment (for indiv. who have minimal/no need for DT who require work and supervision in a sheltered setting), and Supported Employment (SEP-provides individuals with vocational supports and services in community-integrated work settings with other workers who are non-disabled.) 18 years old No upper limit Yes
Eligibility Determination Provides eligibility determination assistance regarding funding requests, linkage to services, and short-term follow-up. No minimum age  No upper limit  Yes
In-Home, Residential, and Group Respite  In-home respite provides intensive or non-intensive support services to help maintain individuals in their homes. Residential respite provides short-term stays for indiv. in a residential setting that is licensed, certified, or approved and is appropriate to their needs. Group respite provides individuals with supervision and care in a group setting for a portion of the day, typically before and/or after school or day programming. Provides social interaction and exposure to the community. No minimum age No upper limit  Yes
Other Support Services Other miscellaneous supports such as therapies, family supports, etc. Varies  Varies  Yes


Transition Age Grid, DHS- Division of Mental Health

Service Area Brief Description   Minimum Age for Eligibility Maximum Age for Service Delivery Are ISBE Transition Services up to Age 22 Permissible under Current Age Limits and Policies If Individual Desires Them?
Assertive Community Treatment An evidence-based model of treatment/services that provides an inclusive array of community-based mental health and supportive services for adults with serious and persistent mental illness or co-occurring mental health and medical or alcohol/substance abuse disorders. It requires an intensive integrated package of services, provided by a multi-disciplinary team of professionals over an extended period of time.   18 years No upper limit Yes
Community Support (indiv. and group) Services and supports for children, adolescent, adults and families necessary to assist a client to achieve and maintain rehabilitative, resiliency and recovery goals. The service consists of therapeutic interventions that facilitate illness self-management, skill building, identification and use of natural supports, and use of community resources.   0 years No upper limit Yes
Community Support (Team) Individual services and supports available 24 hours per day and 7 days per week for children, adolescents, adults and families to decrease hospitalizations, crisis episodes and increase community functioning in order for the consumer to achieve and maintain rehabilitative, resiliency and recovery goals. Service consists of therapeutic interventions delivered by a team that facilitates illness self-management, skill building, identification and use of natural supports, and use of community resources.   0 years No upper limit Yes
Community Support - Residential Services and supports for children, adolescents, adults and families necessary to assist a consumer to achieve and maintain rehabilitative, resiliency a recovery goals.   0 years No upper limit Yes
Crisis Intervention (pre-hosp/SASS) Screening or crisis assessment activities provided to a child who is referred to a SASS provider by CARES because the child is experiencing a crisis that creates a risk of psychiatric hospitalization. 0 years 21 years Yes
Psychotropic services Time spent with consumer in medication administration or monitoring and evaluating symptom response or training the consumer and/or family in medication administration 0 years No upper limit Yes
Vocational Services Vocational engagement (activities to engage the individual in making a decision to seek employment), vocational assessment (developing a vocational profile to guide in seeking employment), job support (helping to find and procure a job) and job retention (helping to keep the job) 14 years No upper limit Yes
Psycho Social Rehabilitation Facility-based rehabilitative skill-building services. The focus of treatment interventions includes skill building to facilitate independent living and adaptation, problem solving and coping skills development 18 years  No upper limit Yes
Therapy/counseling Treatment to promote emotional, cognitive, behavioral or psychological changes using psychotherapy theory and techniques 0 years   No upper limit Yes
Outreach and Engagement Identification and engagement of adults, adolescents or children suspected to have a serious mental illness or serious emotional disorder in need of mental health services, but who have not currently consented to receive services. 0 years No upper limit  Yes
Outreach and Engagement - Child and adolescent non-SED  Identification and engagement of children or adolescents suspected to be at-risk of mental illness due to demonstrated behavioral, social or emotional impairment 0 years  Up to 18th Birthday No
Stakeholder Education Educating, training or providing information to community stakeholders on mental illness, factors placing children at-risk of mental illness, and mental health services. The service may educate the general community about mental health services and individuals with mental illness or emotional disturbances and may include how to understand, approach and work with such individuals.   0 years  No upper age limit  Yes
Linkage for children and adolescents at-risk of needing metal health services Activities and supports to link children at risk of needing mental health services to services that will reduce or eliminate risk factors, short-term supportive counseling for the child, adolescent and their family, service planning and evaluation, collaboration, facilitation and linkage with service providers through case coordination activities, and advocacy. 0 Up to 18th Birthday NO

Transition Age Grid, DHS--Division of Rehabilitation Services

Service Areas Brief Description  Minimum Age for Eligibility Maximum Age for Service Delivery Are ISBE Transition Services up to Age 22 Permissible Under Current Age Limits and Policies if Individual Desires Them?
Service Coordination Service coordination through the use of Transition VR Counselors in the High Schools. Additionally, adult vocational services are coordinated through education, referral and vocational counseling. None but coordination usually occurs at 14 1/2. None but must be willing and able to become employed. Yes
Home-Based Support Services-Children
Home-Based Support Services-Adults Provides home based daily living services for individuals with disabilities who are in danger of nursing home placement. No minimum  Eligibility determination prior to age 60 but services may continue beyond 60 No
Residential Services-Children Operates three state schools - ISVI, ISD, and ICRE-R that provides educational and residential services to youth from birth through a fifth year senior high school program depending upon the location 5 22  Yes
Eligibility Determination Eligibility and order of selection determinations for vocational rehabilitation services (VR). Additionally determinations of need for (HSP) the home based program VR -None but usually 14 1/2. HSP - None  VR - Yes HSP - No
In-Home, Residential, and Group Respite
Other Support Services

Support and auxiliary service to assist in substantial vocational rehabilitation services identified in a individualized plan for employment (IPE).


The STEP Program partners with school districts to help students achieve their employment and post-secondary education, and independent living goals 

None but usually 14 1/2.


 


 


 


14 1/2


 


 


 


 


 


Upon Graduation

Yes


 


 


 


Yes

APPENDIX B

REFERENCES

Betz, C.L. and Redcay, G. (unknown date). Lessons learned from providing transition services to adolescents with special health care needs.

 Blomquist, K,, Brown, A.J, and Presler, E. (unknown date). Transitioning to Independence: Challenges for the Young People with Disabilities and their Caregivers.

Bremer, C., Kachgal, M. and Schoeller, K. (1996-1997). Self-Determination: Supporting Successful Transition.

Brooke, V., Revell, G., and Wehman, P. (unknown date). Quality Indicators for Competitive Employment Outcome: What Special Education Teachers Need to Know in Transition Planning.

Clark, H.B. and Deschênes, N. (2008). issue brief # 1 - Lessons from successful transition systems: Facilitating Transition to Adulthood for Youth and Young Adults and Their Families. Tampa: University of South Florida, Louis de la Parte Florida Mental Health Institute, National Network on Youth Transition. Retrieved April, 2009 from http://nnyt.fmhi.usf.edu/resources/issue-briefs/NCYT-IssueBrief-01.pdf.

Davis, M., Geller, J., and Hunt, B. (Nov., 2006). Within-State Availability of Transition to- Adulthood Services for Youths With Serious Mental Health Conditions. Retrieved April, 2009 from http://www.psychservices.psychiatryonline.org/cgi/reprint/57/11/1594.

Hart, D., Zimbrich, K., and Whelley, T. (2002). Challenges in Coordinating and Managing Services and Supports in Secondary and Postsecondary Options. Retrieved April, 2009 from Issue Brief of the National Center on Secondary Education and Transition.

Hart, D., Zimbrich, K., and Whelley, T. (unknown date). Challenges in Coordinating and Managing Services and Supports in Secondary and Postsecondary Options.

Koch, L. (unknown date). Career Development Interventions for transition-age Youths with Disabilities.

Lansing, R. and Certo, N. (unknown date). Integrating Service Systems at the Point of Transition for Youth with Significant Disabilities: A Model that Works.

Lehmann, C.M., Clark, H.B., Bullis, M., Rinking, J., and Castellanos, L. (unknown date). Transition from the School to Adult Life: Empowering Youth Through Community Ownership and Accountability.

Meieis, A.I., Sawyer, L., Eun-Ok, Hilfinger, Messias D., and Schumacher, K. (unknown date). Experiencing Transitions: An Emerging Middle-Range Theory.

The National Center on Outcome Resources (NCOR) :research division of the Council on Quality and Leadership in Supports for People with Disabilities. (2001). Practice Guidance for Delivering Outcomes in Service Coordination.

Paulauski, T. and Manaster, F. (Feb., 2005). Transition to Employment and Adult Services for Youth with Developmental Disabilities in Illinois; Promoting Incentives for Integrated and Self Employment Project. Retrieved April, 2009 from http://www.isbe.state.il.us/iicc/pdf/arc_family_manual.pdf.

Peterson, K. (1998). Supporting Dynamic Development of Youth with Disabilities During Transition: A Guide for Families

U.S. Government Accountability Office (2008) Transition-Aged Youth Community of Practice. Retrieved April, 2009 from http://www.tapartnership.org/COP/transitionAgedYouth/default.php.

Various authors (May, 2004). Interagency Compendium- Illinois Transition Programs and Services: Working Together to Improve Transition Outcomes for Youth with Disabilities and their families. Retrieved April, 2009 from http://www.isbe.state.il.us/iicc/pdf/interagency_compendium.pdf