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A WHITE PAPER ON ENHANCING SERVICES TO ADULTS WITH DUAL DIAGNOSES OF DEVELOPMENTAL DISABILITIES AND MENTAL ILLNESS IN THE STATE OF ILLINOIS 

Submitted by

The Institute on Public Policy for People with Disabilities

INTRODUCTION

Many adults who have multiple disabilities such as a developmental disability, mental illness, physical disabilities, behavioral disabilities, substance abuse or other noted problems are not supported effectively in the state of Illinois. Misdiagnosing adults with multiple needs and/or dual diagnosis of developmental disabilities and mental illness (hereafter “dual diagnosis”) is rampant.   

Additionally, those adults having such dual diagnoses are often noted as having behavioral issues without recognition of an underlying mental health issue. Currently, effective treatment for these individuals is sorely lacking. Evidence of this can be seen in the fact that almost 60% of all people referred to the Institute's Crisis Innovations Project (CIP) from the community over the past two years have presented with a dual diagnosis.   

In addition, DHS/DDD SODC admission data over the same time period indicate that over 70% of the people admitted to DD state operated facilities from the community had a dual diagnosis as well. 

Government systems in the state are designed to serve individuals with a “single” diagnosis or challenge, and are therefore not meeting the needs of individuals with dual diagnosis and/or severe behavioral disabilities that cross-governmental department boundaries.

People with disabilities are similar to the general population.  We are a complex mixture of strengths and weaknesses and no one system can meet all our needs.  The same holds true for people with disabilities – no one system can meet all of their needs and they must be able to cut across governmental department boundaries to ensure competent and effective services.  

We believe it is critical in the midst of these issues to stop the “hyphen” debate.  It does not matter which side of the hyphen, i.e., DD or MI, the person is on.  What matters is that this is a person with characteristics, individual dreams, and needs that must be met within a holistic system, not one built in silos, divisions or bifurcations that cause lack of appropriate response.   

We believe, more than ever, it is necessary for stakeholders to come to the table and to decide on a common goal and a common approach that offers flexible funding, wraparound supports, and community support that endorses the concept that individuals are citizens first and consumers second. 

OVERVIEW/BACKGROUND 

Since the summer of 2005, the Institute on Public Policy for People with Disabilities (“Institute’) has been working on the development of a comprehensive community crisis response for the State of Illinois that is community-based. 

Through the efforts of a Crisis Innovations Project jointly developed with the Department of Human Services, Division of Developmental Disabilities, we have worked very successfully on implementation – not just philosophy.  Through an entirely volunteer effort, we have brought together interested parties from around the state to look at how we might differently support individuals who are or may soon be in crisis.   

The intent was not to supplant the developmental disabilities clinical review process known as CART; nor to set up a parallel universe, but rather to see if it is possible to look at a person through a different set of eyes with a group of individuals supporting him/her who are dedicated to a sole mission, i.e., keeping the individual in the community in the most natural setting possible, and avoiding more restrictive and costly state institutional placement.   

Through the Institute’s efforts in this area, as well as through our individual members’ other experiences, we have worked proactively with DHS-DD providers, families, adults with disabilities, and, frankly, anyone who would agree to try a different approach.  What we have come up against is a series of issues that we believe need to be addressed with a unified approach and in the best manner possible.   

It is with this thought in mind that we offer the following observations:

CHALLENGES AND GAPS 

1. Access to competent and effective community-based services for adults with dual diagnosis.

a.   The data show that the highest percentage of adults being admitted who have dual diagnosis and also significant behavior disabilities are those most likely to present for admission to state operated facilities (SODCs), and are the least likely to leave due to a lack of adequate community resources.

b.      Because of the multiple complex disabilities of adults who have dual diagnosis and other behavioral issues, there are few community-based practitioners who are well versed in developing and providing services.  Accessing the small number of experts in this area is difficult.

c.       There is an inadequate distribution of competent practitioners throughout the state.

d.      Hospitals, community health centers, and other health providers lack the expertise and/or staff to provide an adequate assessment of the multiple factors impacting adults with dual diagnosis.

e.       There is a lack of training at all professional levels of the mental health and health care system to evaluate symptoms and disabilities, including differential diagnoses and treatment of mental health issues experienced by adults with developmental disabilities.

f.       Little to no training is provided in medical school or ancillary health professions about the symptoms, behaviors, and health needs of adults with dual diagnosis who have developmental disabilities and mental illness.

g.      There are few hospitals with psychiatric units or behavioral health units that are capable of treating or serving adults with developmental disabilities who also exhibit mental health and/or behavioral disabilities. 

h.      There is a long waiting list at the few hospitals that have units set up to serve adults with multiple disabilities. 

2. Lack of training
   1. There is little training available that focuses on the topic of dual diagnoses and/or behavioral disabilities.
   2. There is not a known “Center of Excellence” where professionals can obtain information or resource help.
   3. A standard body of knowledge about managing multiple, complex problems needs to be developed and shared so that both professional and paraprofessionals can be educated regarding symptoms, behaviors and treatment.
   4. Neither the DHS-DD Direct Service Professional (DSP) training nor the DHS-DDD QMRP curriculum include interaction and intervention with adults who have dual diagnosis, including those with significant behavioral disabilities.
   5. Therapy techniques used for persons with a typical IQ, including those diagnosed with a mental illness, are often not transferable to individuals diagnosed with lower IQs. Transference/counter-transference is only one of the issues needing to be addressed.
   6. In addition to the difficulties of finding enough qualified DSPs, we find that the type, level, and nature of the training and support that are offered to DSPs is often lacking.  While there is a core curriculum that has been developed and implemented through the Division of Developmental Disabilities, ongoing training and support of individuals is often missing.  In addition, we find that often there is not ongoing review of what types of staff we are hiring to work with adults in crisis.  If the goal indeed is calm, not control, then we need to be sure that the staff that is working with individuals in crisis have the right temperament themselves to make these supports work.

    

3. Congregate Living
   1. Many behavior problems and exacerbation of mental health issues arise when people are forced to share space, especially bedrooms.
   2. Inadequate reimbursement from the state literally forces providers to congregate six to eight adults with disabilities into one residence creating an almost insurmountable amount of behavioral disabilities. 

4. Cultural Competency
   1. We have designed a system (term used loosely) to serve the predominant cultures in this state.
   2. We have not brought anyone serving minority populations, especially Hispanic and Asian Pacific Islanders to the table to gain an understanding of how to meet both the individual’s personal and cultural needs.

5. Crisis prevention, intervention and stabilization service
   1. In most geographic areas of the state, there are no resources available to address emergency crisis situations that may arise in the person's residen-tial or day/program settings.
   2. Most mental health professionals are reluctant to provide treatment services to adults with developmental disabilities who also present mental health needs.
   3. In areas where resources may be available, there is a lack of effective coordination of the services.
   4. Throughout the state there are few resources to address "emerging"
      behavioral issues.

6. Rules, regulations and interpretive guidelines
   1. Existing ICF and CILA regulations do not adequately address adults with dual diagnosis.
   2. Teams supporting adults with dual diagnoses who live in a “DD” setting, have great difficulty in developing treatment approaches that meet the DD
      requirements, and vice a versa.
   3. At a minimum:

                                                              i.      A psychiatric diagnosis is the result of a thorough psychiatric evaluation and through the use of standardized psychopathology screening tools;

                                                            ii.      A psychiatric diagnosis is the basis for the use of psychoactive medication;

                                                          iii.      Medications prescribed correspond to known standards of effectiveness;

                                                          iv.      Individuals are monitored for drug side effects on a regular, systematic basis;

                                                            v.      Individuals receive the fewest psychoactive medications possible at the lowest effective dosage possible; and

                                                          vi.      There is a system for regular review.

7. Lack of political will to address the issues
   1. The “elephant under the rug”: Most DD and MH professionals acknow-ledge that appropriate services for adults with dual diagnoses are seriously lacking across Illinois, but have not devoted time or resources to address this complex and challenging systems issue.
   2. Lack of ownership of this problem by key stakeholders - the Division of Mental Health, Division of Developmental Disabilities, or community agencies and professionals - has resulted in a lack of political will to create solutions and identify resources.
   3. None of the statewide associations advocating for disability services have been made aware of the scope of these issues, thus ensuring that services for adults with dual diagnosis never become a legislative priority.

 HISTORICAL ISSUES 

1.       General problems

a.       While Illinois has never adequately addressed the needs of individuals with multiple disabilities, the problems of serving this population have been exacerbated through the creation of DHS.  Even though this was designed to encourage the departments to work together, it has fostered more of a silo mentality than that which existed under previous organiza-tional structures. 

b.      Public Health has been left completely out of the information, training, and service loop. 

c.       The cultural barriers and disabilities that face some adults whom we serve have not been addressed. 

d.      We have not attended to competency issues among providers.  Not every provider is capable of serving adults with dual diagnosis.  Just as not every hospital is a “Level I Trauma Center”, not every provider will be able to support these individuals.

SOLUTIONS 

Stakeholders 

1. Bring stakeholders together on as statewide basis. Stakeholders should include, but not be limited to, DHS/DDD, DHS/MH, trade associations, advocacy groups, self-advocacy groups, ISC, SODC, families and individuals receiving or awaiting services.  Participants can be recruited through the SAC and Network Advisory Councils.  One of the first steps for the group would be to identify additional stakeholders to recruit (e.g., the Illinois Hospital Association). The IHA and other stakeholders may not have much to offer until much of the groundwork has been completed.

2. Subsequent to #1 above, establish local/regional groups of stakeholders to address the issues specific to the geographic area.  These groups may include mental health clinics, mental health crisis teams, 708 (mental health) boards, 377 (DD) boards, providers, families, etc.

Capacity Building And Collaboration 

1.   Convince key leaders in the Divisions of Mental Health and Developmental Disabilities that dual diagnosis services must become a high priority issue to be addressed this year.   

2.   Add DD expertise to mental health crisis teams and Medicaid-funded behavioral health services. 

3. Collaborate with the Illinois Hospital Association with the goal of establishing dual diagnosis in-patient treatment services throughout the state.
    

4. Individual agencies need to partner with local hospitals and group practices in the recruiting of dual diagnosis specialists and in the development of hospital programs that are geared towards meeting the needs of the adult population that has dual diagnoses.

5. Add services for persons with dual diagnoses as a priority on the legislative agendas of all major disability advocacy groups and trade associations.

Funding 

1.      Advocate for state funds to create a comprehensive plan to develop, finance, and implement best practice services, and roll out a pilot in FY 09 to evaluate its efficacy.

2.      Determine and provide incentives to motivate psychiatrists to treat individuals with “multiple disabilities.”

3.      DHS should contract with nationally recognized experts in the field of dual diagnoses to conduct a series of trainings throughout the state on a regular basis.

Quality Training & Technical Assistance 

1.      Create a Center of Excellence to draw from national/international research and Best Practice examples.  The Center would locate, develop and/or provide train-ing to address identified needs.  It would also be responsible for identifying assessment instruments, best practice use of technology, and assisting in establish-ing minimum standards of practice.

2.      DHS should contract with nationally recognized experts in the field of dual diagnosis to conduct a series of trainings throughout the state on a regular basis.

3.      Ensure the implementation of best practices based on a recognized quality standard and outcomes tool that utilizes evidence-based practices as a foundation.

4.      Update the DHS-DDD QMRP curriculum to include interaction and inter-vention with adults with significant behavioral disabilities, including individuals with dual diagnosis.

5.      Develop specific training for “front-line” staff who are responsible for supporting adults with dual diagnosis.

6.      Identify or develop, if necessary, and then train on assessment tools that may be used to differentiate between symptoms/observed behaviors associated with mental illness and those that may have challenging behaviors or the result of an underlying medical condition.