Research Needed for Those with IDD/MI Dual Diagnosis!!!!

We need more research in the following areas to advance the treatment of those with IDD/MI dual diagnosis.

1. The best methods of restraint and seclusion 

2. The best methods for de-escalating a crisis before, during, and after the crisis 

3. How to introduce body cameras to the psychiatric system 

4. What exactly is trauma-informed care, and examples of trauma-informed care

5. The effectiveness of barcode medication equipment to protect service recipients from medication errors

6. How ID cards or wristbands resolve major safety concerns, and how to encourage service recipients to wear their ID cards or wristbands 

7. How statewide bed registries and trackers reduce the amount of time a service recipient spends in crisis centers 

8. How many dual diagnosis inpatient beds are needed, and what do hospitals need to do to establish dual diagnostic capability 

9. How to circumvent the Medicaid IMD exclusion and why we need to do so

10. What medical clearance protocols are followed, and how can we ensure compliance 

11. Civil commitment, involuntary medication, forensic commitment, and guardianship standards around the world and country 

12. Ideal coercion-free healthcare for mentally ill service recipients, including the Trieste, Italy model

13. The benefits of having a separate State Hospital for those with dual diagnosis (I.e., a neuropsychiatric center) 

14. Forensic care of those with dual diagnosis and violent criminal charges, and what treatment models are effective for this subpopulation

15. Alternatives to group homes and supportive apartments (I.e., intentional community)

16. The PASRR (Pre-Admission Screening and Resident Review) process and nursing homes for those with dual diagnosis, and why we need specialized units in nursing homes for those with dual diagnosis 

17. The effectiveness of boot camp military-style programs for adults and youth with emotional behavioral disabilities and Autism 

18. How aversive behavioral interventions are abused, such as aversive shock for severe self-harm and aggression

19. How unfairly played group games impact recovery and treatment retention, if at all

20. Why does mechanical restraint go down when chemical restraint goes up 

9 Reasons Why We Need Facility-Based Residential Programs

 We need facility-based residential  programs for individuals with dual diagnosis because: 

1. Those with dual diagnosis with severe challenging behavior are not usually welcome in group homes. 

2. When residents display challenging behavior, staff often call 911, and the police are often summoned and bring the resident to the hospital. In a facility, staff from other units may be called to help deal with the crisis. 

3. Facilities offer more stimulation for service recipients who thrive on activity and “noise” 

4. Facilities have the infrastructure to use mechanical restraints, personal control techniques, and hands-on behavior management techniques. Group homes are very hesitant to use these strategies and only use them after 911 has been called. Facilities avoid calling 911. 

5. Facilities reduce the waitlist for residential services since there are more beds in facilities than in group homes. 

6. Facility-based programs allow families to have choices for residential care. 

7. A facility offers more structure than a group home, and some people need structure only for the support found in a facility-based program. Daily schedules and activities are a hallmark of programming in a facility, and group homes are less structured. 

8. Some people need more skills training than is available in a group home. A facility offers more opportunities for skills training in a controlled environment. 

9. Group homes do not work for everyone!!! 

We need more campus programs and dormitory-style large buildings with locked units to serve the most difficult service recipients with dual diagnoses. 

Note that I don’t use the term “institution” to describe these programs, as that term is very reminiscent of the 1980s, when there were "real" institutions. 

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Continuing Care Residential Facility

 I believe we need a non-institutional residential facility designed similarly to a continuing care retirement community with various levels of care that individuals may move through as their needs change; yet, continue to remain with the same treatment team, recommendations, diagnostic assessment, and a familiar environment for those with Autism and/or mental illness and challenging behavior. This type of facility should be run by a nonprofit provider agency or hospital network, not the State, to prevent it from becoming an “institution”. 

Levels of care at this type of facility should include: 

• Forensic Care Units: designed similarly to a therapeutic correctional facility for those with criminal charges
• Intensive Care Units: designed similarly to a forensic facility but with more of a focus on rapid tranquilization using antipsychotic medications and behavior modification, for those with extremely chronic, dangerous behaviors and who fail or get "kicked out" of less restrictive programs
• Inpatient and/or Dormitory Units: service recipients live in a large building with locked and unlocked units 
• Campus Residences: individuals live on a large piece of land in cottages or small dormitories 
• Supervised Apartments: service recipients live in individual apartments with 24-hour staff in a large disability-only apartment complex

This type of facility will increase continuity of care, as the same treatment providers will possibly follow service recipients throughout their time at the facility. It is intended for long-term, lifelong placement, and the individual will receive "Active Treatment." It should not be restricted to those with an IQ under 70, and higher-functioning and lower-functioning service recipients will be admitted to different sections of the facility to allow for appropriate treatment. 

Funding streams may come from the State developmental disabilities agency (possibly as an Intermediate Care Facility for Intellectual Disabilities [ICF/ID]), mental health agency (possibly through its own funds as Medicaid will not fund a psychiatric facility larger than 16 beds), Medicaid (possibly as an Intermediate Care Facility for Intellectual Disabilities [ICF/ID] or Skilled Nursing Facility [SNF]), and more. 

This will be ideal for those who do not succeed in group homes because of their behavior. However, we do not want to make this a prerequisite for admission to a continuing care facility like this. We do not want to wait until someone fails before considering them for a facility like this. 

When the individual receives treatment aimed at reducing challenging behaviors, their challenging behaviors may decrease, and they may move to a lower level of care within the facility. Yet, when there is a crisis or escalation of challenging behavior, they can easily move to a higher level of care without going to the hospital and without police intervention. 

This type of facility will also be ideal for those with primary mental illness (standalone or with a developmental disability) who are discharge resistant or who face significant barriers to discharge due to chronic higher-acuity behaviors, as an alternative to a State institution. Oftentimes, psychiatric hospitals and units only stabilize medications (not provide behavior modification). They only provide acute care, and these individuals have chronic behavioral problems. A facility like this could help supplement the care given in a psychiatric hospital or unit when a State Hospital is not appropriate, including for forensic service recipients. It is widely known that short-term psychiatric hospitalization only causes more disruptions in the lives of those with Autism or severe mental health challenges, and it is also known that short-term psychiatric hospitalization may reinforce the challenging behaviors that led to it. As of yet, there are no better alternatives. 

This type of continuing care facility is an alternative to resolve all these problems.

Sensory-Friendly Transportation

 I believe we need to provide those with Autism with the option of using sensory-friendly public transportation when they cannot tolerate a bus or train for sensory reasons. This would allow them to access small group rides in a car, minibus, or minivan rather than a traditional public bus or train. This is not medical transportation, and it could be used to get to work, family, and community activities, not just medical appointments. 

I believe we need to expand upon the idea of using Uber as a transportation provider, which will help to provide special transportation services for those with Autism so that no one with Autism has to arrive at their destination in sensory overload (which a bus or train could produce).

In New Jersey, I suggest that NJ Transit Access Link expand its criteria to include those with Autism who cannot tolerate a bus or train for sensory reasons.

The New Jersey Division of Developmental Disabilities (NJ DDD), ModivCare, LogistiCare, and Medicaid need to collaborate to create this type of transportation.

While many group homes have transportation through house vans, this is simply not enough to get everyone to their desired destinations. There are not enough vans and staff drivers to get everyone where they need to be at the right time. Some individuals are forced to use public transport, which again should not be the only option.

NJ DDD needs to consider providing individuals receiving transportation services out-of-state rides, so they can see far away friends and family. 

NJ-supported employment programs need to provide sensory-friendly transportation so individuals can get to work, even when they cannot tolerate a bus or train.

While some people with Autism do just fine on a bus or train, we need other options for those who have difficulty with traditional public transportation.

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Autism Therapies

 Other Autism Therapies

There is a plethora of therapies and treatment models available for those with Autism Spectrum Disorder, other than Applied Behavior Analysis (ABA) and Positive behavioral support (PBS), to be used in conjunction with and separate from ABA and PBS, which are just as effective or more effective than ABA and PBS.

Treatments include:

1. the Alert program (the How's my Engine Running program)
2. the Zones of Regulation and Social Thinking curriculum
3. Son-Rise program
4. Animal Assisted Psychotherapy or Pet Therapy
5. Equine Assisted Psychotherapy and Therapeutic Horseback Riding
6. Social Stories
7. Comic Strip Conversations
8. SELF (Safety, Emotions, Loss, and Future) model
9. WRAP (Wellness Recovery Action Plan)
10. Dialectical Behavior Therapy for Special Populations (DBT-SP)
11. The Emotion Regulation Skills System for Cognitively Challenged Clients
12. ESCAPE-Now curriculum
13. Circles program
14. Collaborative Problem Solving model
15. Motivational Interviewing
16. Supportive Humanistic Psychotherapy
17. Trauma Informed Care
18. Cognitive Behavior Therapy (CBT)
19. Trauma-Focused Cognitive Behavior Therapy (TF-CBT)
20. Exposure Response Prevention (E/RP)
21. Psychopharmacological Intervention
22. The TEACCH approach 

Again, we need to not only provide but also promote other therapies in addition to ABA and PBS. Everyone is unique and ABA and PBS do not work for all individuals with Autism. It is not a one-size-fits-all situation.