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.

Please take a moment and comment to let me know you were here and what you thought of my blog.

Wheelchairs are Not Restraint Chairs on Wheels

Sometimes, traditional wheelchairs are used as restraint chairs on wheels to move uncooperative service recipients from place to place. This can be deadly. 

In my experience, I was physically held in a wheelchair to be moved from unit to unit when I refused the transfer. From the struggle that occurred during the incident, I ended up on the floor underneath the wheelchair in a position where my diaphragm could not easily expand and breathing was difficult. This can cause positional asphyxia and people can die this way. 

I also witnessed staff strap a child into a wheelchair with restraints and move them to the Quiet Room. As a result of the struggle that ensued, the child ended up in an upside-down position with the restraints wrapped around the child’s neck. This can cause strangulation. 

Rather than using makeshift restraints (I.e. Traditional wheelchairs), we need to purchase “real” restraint chairs with wheels and use safe and appropriate ways of moving uncooperative service recipients from place to place. 

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. 

Nursing Homes

 

Please be advised that use the term “LTCF” in place of “Skilled Nursing Facility”. 

I believe we should expand the criteria for nursing home level of care (long-term care facilities – “LTCFs”) to those with mental illness, who are too symptomatic to live in a community group home and/or supportive housing living arrangement, regardless of whether or not they have medical problems and/or self-care deficits.  Oftentimes, people with severe mental illnesses are housed in State Hospitals or keep returning to Emergency Rooms or correctional facilities through the revolving doors, seeking treatment of a longer duration than is available in regular short term psychiatric facilities.

With many States privatizing their State Hospitals, it is safe to predict that at least some of these individuals will be left to fend for themselves in a dangerous world. Many hospitals will discharge individuals to a homeless shelter. This is not ideal whatsoever. Homelessness is a big problem for those with mental illness and having a continuum of housing options, including more restrictive options, such as LTCFs, would be a better solution. 

In LTCFs, there is the infrastructure to have various rehab programs, run by a full treatment team, including nurses, direct care staff, medical security officers, psychiatrists, psychologists, behavior analysts, medical doctors, family specialists, social workers, counselors, dieticians, and peer support specialists. In other settings, these programs and the full treatment team may not be readily available.

Letting people go around hurting themselves and/or others without professional intervention in a safe setting is a violation of everyone’s right to a safe environment. In LTCFs, there is more external control for those with a high suicide and/or violence risk and who lack internal impulse control. In a group home or supported housing, you can just walk out and hurt someone. In an LTCF, the doors are usually locked, and you need supervision to leave. Also, LTCFs may have the full repertoire of restraints and seclusion, including physical holds, seclusion, mechanical restraints, and chemical restraints. Having a setting with a full repertoire of restraints and seclusion is ideal for those who continue to need these interventions for dangerous behavior. Calling 911 or 988 will not suffice as individuals may be arrested or brought to the Emergency Room, which results in very expensive jail and hospital admissions. We need a “safety net” treatment setting for those who cannot live in a community setting; yet, do not need a hospital (such as those with chronic mental illness, rather than a single acute episode).

LTCFs may become an option for those on Forensic Status (i.e., with criminal charges), when the individual is found Not Guilty by Reason of Insanity or Incompetent to Stand Trial. In this case, we need special highly secure forensic LTCF units, with video surveillance monitoring, security control centers, secure rooms/cells, electronically controlled doors, more security officers on staff, etc. These are mental health-equipped units, possibly funded and staffed by the local sheriff’s office, similar to the Bergen Regional Medical Center Forensic Unit in Paramus New Jersey.

They would need to reconfigure units in current facilities into specialized units (without building new buildings) in LTCFs for those with mental illness with admissions to these units stipulated by the results of an individual’s Pre Admission Screening and Resident Review (PASRR). We need to add a category to the PASRR for special services within a nursing facility, not just the option of psychiatric hospitals or community services. This should allow more robust individuals with or without medical problems and/or self-care deficits to be admitted to an LTCF when they need custodial care beyond what a group home can provide.

As suggested, some people will always require custodial care in a congregate care setting. LTCFs will help fill this gap in care for those with the most severe, disabling, and debilitating mental health conditions. Medicaid should fund LTCFs, through LTSS monies, to care for those with mental illness, so they can be discharged from hospitals to a safe setting, that has the resources to treat their mental illness, rather than homeless shelters.

Also, the State should modify its civil commitment laws to allow individuals to be committed to LTCFs, such that individuals cannot leave when they are not capable of self-preserving in the community independently without supervision.

As for me and many others, people linger in hospitals for extended periods waiting for an appropriate placement that never comes. Our system just doesn’t have the infrastructure to maintain people with mental illness in LTCFs. There needs to be an in-between step between hospitals, group homes, and supported housing. Doctors like to play it safe and avoid discharging these individuals because there is just nowhere better for them to go. An LTCF would have been an excellent alternative for people like me. Group homes and supported housing do not cut it for many people with the most severe mental illness.

We have almost 90 pages of LTCFs in New Jersey. Why can’t some of them pitch in to help those with developmental disabilities and mental illness?

NJ Comprehensive Assessment Tool (NJ CAT)Improvements

Why the NJ Division of Developmental Disabilities Comprehensive Assessment Tool (NJ CAT) Needs Improvements: 

First, the NJ CAT (“New Jersey Comprehensive Assessment Tool”)is a mandatory needs assessment to determine what and how much funding will be allocated for services and supports related to developmental disability. After completing the NJ CAT, a tier level is assigned. Tiers include A, B, C, D, and E. Acuity factored tiers include Aa, Ba, Ca, Da, and Ea. Acuity means there are significant clinical needs for either medical or behavioral issues. The A tiers are the highest functioning individuals and receive the least funding. The E tiers are the lowest functioning individuals and receive the most funding. The tiers translate into a budget for the service recipient to purchase services and supports and a reimbursement rate for providers to get paid for helping the individual. 

The NJ CAT does not accurately portray the service recipient's needs. First, many of the questions are black or white, all or nothing, or yes or no. While this multiple-choice format allows for easy scoring, sometimes there is a “yes, but...” answer. There needs to be space for a brief explanation of the individual's needs if needed.

Also, the assessment does not address the individual’s strengths. We need to address the individual’s strengths, not just weaknesses and deficits. 

There needs to be more transparency for the individuals, families, and providers about the NJ CAT scoring method. This will help aid in the answering of questions if the respondents know the weight of each question when the final score is given. 

The NJ CAT needs to be changed to better service those with developmental disabilities, by taking an accurate look at individuals’ needs and strengths.  

Neurobehavioral Programming

Just posting this information about what a neurobehavioral milieu looks like in practice. This contains info from my experience at the Meridell Achievement Center (several years ago) and info from the Internet. Meridell offers two types of programming: traditional behavioral and neurobehavioral. This describes the qualities of a neurobehavioral program for higher-functioning individuals without an intellectual disability (Full-Scale IQ over 70). 

• Assessments should be conducted at admission to determine appropriate strategies and goals, including medication selections. 

• The assessment process should start with a neurophysiological examination, involving a Quantitative EEG with Evoked Potential (QEEG) or Cognitrace Study, reviewed by a Neurologist in consultation with a Neuropsychiatrist / Neuropsychopharmacologist, to determine the presence of a neurological-based psychiatric disorder. The Cognitrace Study, or Complex EEG with Auditory and Visual Evoked Potentials, is a non-invasive (no needles), brain imaging examination interpreted by a Neurologist trained in neurobehavioral disorders especially those related to aggression. 

• Positive findings will allow for precise medication selection which can offer more immediate relief of impulsive, explosive aggression. 

• Testing typically takes about one hour. 

• A Neuropsychiatrist will recommend medications to treat the affected brain areas and stabilize behavior based on the Neurologist’s report. 

• When the individual is stabilized on medication, there should be neuropsychological testing, including tests for IQ, Memory, Executive Functioning, Language, Motor, Achievement, Psychological Testing, and Diagnostic Interview. 

• There should be projective psychological testing to determine symptoms of psychiatric illness and type of personality. 

• There should be Neuropsychiatrists, Clinicians (LCSW, LPC, etc.), Program Staff, Discharge Planners, Neuropsychologists and Neurologists, on the treatment team. 

• There should be suites for QEEG testing and neurophysiological evaluation in the medical areas for higher-functioning individuals. 

• Intensive programming is provided each day, including psychoeducational groups, skills groups, processing groups, recreational therapy groups, and additional recreational, therapeutic activities. 

• Therapy interventions are evidenced-based and informed by models including Cognitive Behavioral Therapy, Systemic Family Therapy, Collaborative Problem Solving, Dialectical Behavioral Therapy, EMDR, and other trauma and relational models. Individual and family therapy is offered every week.

• Therapy includes individual therapy, goals groups, feelings groups, reflection groups, issues groups, psychoeducational Social Thinking and Zones of Regulation groups, recreation therapy, etc.

• There is a drastic difference between a traditional behavioral and neurobehavioral milieu for this population, as described below:

  Neurobehavioral	Behavioral
  Redirecting (without confrontation) Behavioral Contracts (motivate) Modeled behavior by staff Positive Reinforcement Watch for lack of capability Watch for impulsive action The patient receives guided direction The patient was given responsibility/small steps More individual instruction A soothing, less stimulating environment Slower pace Structured transitions (with prompts)	Confronting (empathetic guidance) Interpreting (uncovering insights) Positive peer culture Logical and natural consequences Watch for manipulation (staff splitting) Watch for planned action Patient becomes self-directed Patient takes responsibility Group and individual instruction Lively & cheerful (posters, music, noise) Normal pace Frequent/fluid transitions
  Therapies	Therapies
  Small groups (non-verbal activities) Short sessions (to match short attention span) Experiential (learn by doing) Behavioral	Large groups (with verbal processing) Long sessions (to match normal attention) Solution-focused Cognitive Behavioral

• Sophisticated neuropharmacological treatments geared stabilizing brain function and providing adequate control of explosive aggression and impulsivity, to remove or overcome the neurological barriers to successful treatment of these psychiatric disorders. Medication is targeted at specific areas of the brain.

• While chemical restraints may be used for safety, the goal should be to treat the underlying brain disorder. 

• The treatment environment is also modified to take into account the fact that individuals with neurodevelopmental disorders are easily overstimulated. 

• The milieu is quieter and slower-paced, with many rest periods built into the schedule. 

• Limit setting is accomplished without confrontations that can lead to rage behavior. 

• It is a nurturing, rather than an authoritarian milieu, with an emphasis on redirection.

• There should be positive praise when control is achieved. 

• There should be a concerted effort to avoid a punitive program, and all negative behavioral consequences (not necessarily safety precautions) should be kept brief (15 minutes to 24 hours at a maximum). 

• Social skills training and anger management should be an integral part of all nursing plans. 

• There should be a focus on avoiding power struggles, by encouraging negotiation to obtain needs and decreasing negative attention, by “picking battles”. 

• Staff use a positive approach, by telling service recipients what to do, rather than what not to do. 

• Staff should help service recipients gain insight into their coping skills and work to increase trigger awareness.

• The Safe Behavior System is used, where the emphasis is on safe behavior and then more advanced treatment goals. 

• When someone is unsafe the only goal is to get safe. The 2/4 rule is used. 2 hours away from peers to de-escalate and 4 hours restricted to the unit.

• Once safe, the goal is to be “on plan” or meeting goals. Once “on plan” the goal is to stay “on plan”. 

• A variety of teaching and behavioral shaping methods are used, including

• Redirection- staff tells the service recipient what to do, not what to stop doing

• Modeling and Demonstration

• Mentoring- a certain staff provides individualized support for one service recipient.

• Co-regulation- staff shows caring and affection, predicts needs and wants, and provides caring support during times of stress or crisis

• The 2/4 rule

• Activity by Activity- The service recipient will be held back from the next activity if disruptive or unsafe during the previous activity

• Time-outs

• Direct teaching

• Role-playing

• Redos or Do-overs

• Restorative actions or repairs

• Collaborative Problem Solving- engages staff and service recipients in a discussion to find more effective responses to impulsive misbehaviors

• Staff uses an 80/20 rule which means 80% of the time they are providing praise and positive reinforcement and only 20% of the time, mild and brief consequences

• Service recipients accumulate points to turn in at a points store for small tangible items and/or weekly points that can be cashed in for “big ticket” special privileges and rewards. 

• Service recipients do not lose points; they only earn points

• Service recipients do not need to earn treatment or daily activities, such as meals off the unit and passes with family.

• Well-defined logical consequences leveled at the severity of the problem behavior may be used in moderation. 

• Each unit has two dayrooms. Service recipients are assigned to a dayroom based on their developmental age, level of functioning, and diagnosis. 

• Sometimes there is not a good fit, and a dayroom reassignment may be considered and/or undertaken.

• Developmentally younger service recipients who have more severe skills deficits are assigned to a dayroom with program and group content suited to their needs. 

• There is a highly structured daily schedule.

•  To effectively help these service recipients navigate transitions between activities, staff gives 15, 10, and 5-minute warnings before the change of activity. 

• The physical environment is modified to take into account safety concerns, have lots of space, address sensory concerns (e.g. noise),  and reduce traumatic associations. 

• There is a staff-to-service recipient ratio of 1:5.

All programming is modified to take into account the patient’s neuropsychological limitations as identified on initial assessments