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BUILDING ON SB19-222

12/22/2019

One of the things that has happened over the course of the last 50 years is that basic disability civil rights concepts have been re-stated in numerous laws to address specific contexts -- :

Fair Housing
Section 504 of the Rehabilitation Act
Individuals with Disabilities Education Act (IDEA)
Americans with Disabilities Act (ADA)
Mental Health Parity and Addiction Equity Act
Strengthened Medicaid Network Adequacy Requirements

In a sense, Colorado's Landmark SB19-222 is a part of this tradition, trying to accomplish what is often already legally required but there is insufficient structure to accomplish the task.

Part of the Structure that Colorado needs and is legally required is contained in the 2011 US Department of Justice Guidance on Olmstead, requiring:

Measurable Goals
Reasonable Time Frames, &
Funding to Support the Plan

Further, Olmstead Planning doesn't work as a one-off ad hoc activity, it must be an on-going activity --circumstances are constantly changing. This is both a blessing and a challenge to state government-- and it will require resources to implement.

Medicaid resources could be sought to fund this on-going planning as well as the complicated Medicaid Re-Design the State needs to address:

Supported Housing
Comprehensive Continuums of Care
Housing, Services & Placements for Homeless and Justice-Involved people with cognitive disabilities

CO SB19-222 Individuals At Risk of Institutionalization

HOW MANY OF US WILL RAISE OUR HAND AND ASK FOR HELP?

12/21/2019

One of the things I do to fund Orchid is substitute teaching.

I'm a very direct person and in the course of my life -- I've certainly come up against the limits of that.

One of the things I've found is that asking students if they need help is often a non-starter. "No, got it. Don't need any help."

While that maybe true, often it is not.

Well, that's also true for adults and for myself.

"No, don't need any help -- got it, thanks."

To make life even more interesting, we can generally see where others need help much more than we see it in ourselves and some of this may be hardwired.

So as a mental health/cognitive disability advocate, when I see thousands of people with cognitive disabilities who are homeless and incarcerated -- I want to help the State provide the services, housing and placements needed to deal with this.

When the State says --- "SEE, SEE --- we did this fantastic Anti-Stigma Video" -- we do need to celebrate that.

We also have to re-focus on actually complying with the law and significantly reduce the number of people with cognitive disabilities who are homeless and justice-involved in our State.

THE BIG BLOCKS OF MEDICAID REFORM IN COLORADO & THE US

12/20/2019

Data Collection -- # of people within the State who need LONG TERM CARE as a result of a NEED FOR SUPERVISION.

Combined MI/SU Waiver -- including people with Substance Use Issues who need long term care as a result of a NEED FOR SUPERVISION

Supported Employment -- All Adult Medicaid Long Term Care Waivers should have a SUPPORTED EMPLOYMENT component for those who would like to take advantage of it.

Housing & Assisted Living -- All Adult Medicaid Long Term Care Waivers should have a Housing Component -- most do with respect to Assisted Living. This becomes very problematic when ALRs are NOT making reasonable accommodations for Cognitive Disabilities as required by Law.

Maintain a Waitlist of People in the Waiver Programs who desire Supportive Housing.

CO Medicaid Workgroup on Reasonable Accommodations for Medicaid Providers, especially placement providers such as Assisted Living & Nursing Homes.

There should be no involuntary HOMELESSNESS of People who need Long Term Care as a Result of a Need for Supervision. Anything else is DISCRIMINATION -- which is what we have now.

Determine Need for Secure Bed Space -- as long as we're pretending there are no people with cognitive disabilities in jails & prisons -- this isn't a problem. Once we have the courage to face reality -- it is an issue. This isn't just MI -- it's brain injury, substance use and developmental disabilities.

ORCHID PLANS: ALWAYS OPEN TO REVISION

12/14/2019

FAMILY PRIORITIES

My husband was diagnosed with Stage 4 Metastic Lung Cancer this fall -- this for a man who has never smoked a day in his life.
He has a genetic mutation and is taking a PILL -- it seems to be working
This is a very THANKFUL HOLIDAY SEASON for us

INDIVIDUAL ADVOCACY

We're not going to be able to provide that anymore. [Of Course, what we were providing was pretty limited anyway]
We realize that is pretty cold comfort to individuals & families.
We will be prioritizing the INCREASE of such ADVOCACY RESOURCES in the Community & welcome suggestions or proposals we could SUPPORT and/or take to others.

Colorado Cognitive Disabilities Report 2020

This will be going out under the Orchid banner by the end of the year.
Some have indicated they are willing to review.
What we are looking for are:
- Objections
- Inaccuracies, and/or
- Omissions
We may or may not change the base report based on Feedback -- but we most likely will note the Feedback within the Report. That could be for a lot reasons:
- We don't agree with the Feedback,
- We don't have time to make wholescale substantive changes
- Etc.
- If something is just WRONG -- we will work to correct that.
There likely will be a follow-up report for 2021 -- and some suggestions may be more fully included in that report.

1st Quarter 2020

Much more concentration on upstream Systemic Issues in the US
Finishing & Sending our Letter to the Criminal Law Section of the American Bar Association regarding problems with the DSM 5 and RELEVANCE to the American Criminal Justice System.

WAITLISTS, THE LAW & DISCRIMI-NATION IN MEDICAID COGNITIVE DISABILITY POLICY & REALITY

12/13/2019

Cognitive Disabilities have been a HUGE challenge for our society & others for a very long time -- probably from the beginning.

The Practical & Ethical Challenges have INCREASED, not decreased, with more KNOWLEDGE.

We've paid lip service to those challenges with the passage of various laws, even if we generally don't comply with them.

This idea of "waitlists moving at a reasonable pace" comes from the 1999 US Supreme Court decision in Olmstead interpreting the INTEGRATION MANDATE OF Title II of the Americans with Disabilities Act.

This decision was really a GIFT to the STATES -- unfortunately they haven't bothered to even comply with the "reasonable" demands of Olmstead.

When it comes to ACTUAL Comprehensive Cognitive Disability Housing & Services we've been kicking the can down the road for a long time.

In the MEANTIME, we've now got:

the 2008 Federal Mental Health Parity & Addiction Equity Act
2011 US Department of Justice Guidance & Caselaw saying compliant Olmstead Plans must have:
- Measurable Goals
- Reasonable Time Frames, &
- Funding to Support the Plan
Beefed up Medicaid Network Adequacy Standards.

So what does all this mean for States like Colorado that sometimes maintain waitlists often don't, especially when they are AFRAID of the results such as in the NEED for MENTAL HEALTH & SUBSTANCE USE TREATMENT?

Well, we probably do need to establish waitlists so that we can devise REASONABLE PLANS of CORRECTION and those waitlists need to be by LEVEL OF CARE needed.

We didn't get to the CURRENT REALITY of lotsa people who are incarcerated or homeless needing LONG TERM CARE by ACCIDENT.

WE MUST ADDRESS THE NEEDS OF THOSE WITH THE HIGHEST NEEDS -- FIRST -- Otherwise, Incarceration & Homelessness are often the predictable results.

WE'VE HAD ENOUGH OF THE INSANE CONSEQUENCES OF FEDERAL & STATE COGNITIVE DISABILITY POLICY--and reality.

CO Brain Injury Waiver Wait List
8.515.8 WAITING LIST 8.515.7.A.

Persons determined eligible for HCBS-BI services that cannot be served within the capacity limits of the HCBS-BI waiver shall be eligible for placement on a waiting list.

1. The waiting list shall be maintained by the Department.

2. The date used to establish the person’s placement on the waiting list shall be the date on which all other eligibility requirements at Section 8.515.5 were determined to have been met and the HCBS-BI Program Administrator was notified.

3. As openings become available within the capacity limits of the federal waiver, persons shall be considered for services based on the date of their waiting list placement.

"UNCONSCIOUS BIAS" -- WE'RE ALL "GUILTY" OF IT --AND THAT DOESN'T MAKE IT OKAY OR ANY LESS HARMFUL

12/6/2019

Key & Peele
"Why British Actors End Up With All the Good Roles"
Warning: Language, Acting Violence

[TO OUR EYES, THIS VIDEO SAYS A LOT ABOUT UNCONSCIOUS BIAS AND THE RESULTING RIDICULOUS EXCLUSION. THIS PLAYS ITSELF OUT IN A MILLION DIFFERENT WAYS IN OUR SOCIETY]

The human brain is a remarkable achievement in evolution.

Unfortunately, the brain activity that kept the human species alive for millions of years is the same brain activity that keeps us from achieving equality today.

Author, speaker and CEO, Valerie Alexander, explains how the human brain instinctively reacts when encountering the unexpected, like saber-toothed tigers or female tech execs, and proposes that if we have the courage to examine our own behavior when faced with the unfamiliar, we can take control of our expectations, and by doing so, change the world.

Unconscious Bias

I really worry when we are still struggling with ethnic and so-called "racial" differences [folks there is 1 Human Race].

There are some Human DIfferences in Cognition, Information Processing, Emotional Regulation, etc. -- across human beings -- whatever their shade of skin.

How are we going to deal with that when we can't even deal with shades of skin?

Well, the reality is -- WE'RE NOT DEALING WITH IT.

For the most part, we are NOT dealing with it is because our BIAS is so UNCONSCIOUS that we are OBLIVIOUS to the ENORMOUS HARM it creates.

AND THAT HARM IS RUNNING WILD IN THE CRIMINAL JUSTICE SYSTEM.

THE SPIRITUALITY OF OUR BIOLOGICAL/ ENVIRON- MENTAL REALITIES

12/5/2019

-- "HUMAN INTENT" IS NOT OUTSIDE THOSE "REALITIES" -- BUT A REFLECTION OF THEM-- BEYOND GOOD & EVIL

So when I say "Beyond Good & Evil" -- I DO NOT mean:

Harmful human actions are OKAY -- and we should just go with "Nature," "the Will to Power" or whatever.

What I do mean is that THINGS MUST CHANGE FOR US to move away from those HARMFUL ACTIONS.

Generally, they need to CHANGE a lot more than we "THINK." Specifically, while LECTURING and PUNISHMENT are both undeniably satisfying & regrettable-- they often don't get us very far.

We MUST NOT STOP @ the question of HUMAN INTENT -- and we must MOVE FORWARD to ask the complicated biological/environmental questions of what is causing the "BAD INTENT."

   Now this includes Mental Illness and Bad Social Environments -- BUT it includes a lot of other things too -- like Environmental Toxins such as Lead, Brain Injuries, Compounding Aggression, etc.

NOT YOUR GREAT-GRANDMOTHER'S
"BEYOND GOOD & EVIL"

THE IMMUNE SYSTEM, SOCIAL BEHAVIOR, INTELLIGENCE AND MENTAL ILLNESS

12/4/2019

The point is NOT that the IMMUNE SYSTEM is the answer to EVERYTHING -- it is HUGE PIECE of the Puzzle we've largely been ignoring with regard to MENTAL HEALTH -- but that is really impossible now given current research -- even if much of that research hasn't "TRICKLED DOWN" to the Clinicians and ultimately the Patients.
There are limits to TRICKLE DOWN ECONOMICS and there our certainly dangerous limits to TRICKLE DOWN RESEARCH.
We are going through a massive INTEGRATION of HUMAN KNOWLEDGE--- from a PUBLIC HEALTH perspective integrating physical and mental health won't do us a lot of good if the clinicians are lagging far behind current knowledge.
Just as importantly, if the Clinicians are lagging far behind the Research -- you can be sure our Legal System and Public Policy are lagging far behind as well.

Lead Author of "Hyper Brain, Hyper Body" Study

Hyper Brain, Hyper Body: The Trouble With High IQ

[Orchid: We think this probably applies to most people with "Overexcitabilities" &/or different types of "giftedness" --probably not just High IQ]

A new study in the journal Intelligence reports that highly intelligent people have a significantly increased risk of suffering from a variety of psychological and physiological disorders.

Lead author of the study, Ruth Karpinski, says the findings have implications both for the study of intelligence and for psychoneuroimmunology, which examines how stress responses to the environment influence communication between the brain and immune system.

“Our findings are relevant because a significant portion of these individuals are suffering on a daily basis as a result of their unique emotional and physical overexcitabilities.

It is important for the scientific community to examine high IQ as being front and center within the system of mechanisms that may be at play in these dysregulations,” she says.

Karpinski and her colleagues developed a hyper brain / hyper body theory of integration.

It posits that individuals with high cognitive ability react with an overexcitable emotional and behavioral response to their environment.

Due in part to this increased awareness of their surroundings, people with a high IQ then tend to experience an overexcitable, hyperreactive central nervous system.

University of Massachusetts' Medical school:

Vladimir Litvak, PhD, and colleagues made a startling discovery that immune system signaling can directly affect social behavior. Published in Nature, these findings could have great implications for neurological diseases such as autism-spectrum disorders and schizophrenia.

University of Virginia School of Medicine (2015)

In a stunning discovery, researchers at the University of Virginia School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist.

University of Michigan School of Medicine:

The cells of people with bipolar disorder are more reactive than the cells of people without bipolar disorder. [Additional Reference & Background]

See 3:18: Bipolar linked to the EXCEPTIONALITIES in the Humanities -- above average, below average -- the main thing -- NOT AVERAGE. [Dr. James McCabe of the Institute of Psychiatry in London] [Additional Reference & Background]

The "Blurred Lines" between Some Developmental Disabilities and Mental Illnesses, & Some Ideas About "Giftedness"

THE IMMUNE SYSTEM & MENTAL ILLNESS: THE GOOD NEWS & THE CHALLENGING NEWS

12/3/2019

So "mental Illness" may often begin with:

Developmental Difference -- involving the immune system and epigenetic changes

Further, in modern times, issues involving the IMMUNE SYSTEM seem to have been greatly impacted by changes in the HUMAN MICROBIOME, explained by the "Old Friends Hypothesis"

Our Current understanding is not just of the Brain and the Nervous System -- but of the Brain-Gut-Immune Triad.

Further, all kinds of things can damage this TRIAD. Some of those things are within people's control, many currently are not. -- The Goal needs to be to get more within people's control.

THE GOOD NEWS: Because there are so many things that can damage the immune system, and many people may be struggling with CUMULATIVE DAMAGE -- there may be A LOT OF THINGS THAT COULD PROVIDE IMPROVEMENT.

THE CHALLENGING NEWS: There is an URGENT NEED for the Research Community, Clinicians & Patients to communicate and work together -- if we are to have any chance of remedying the complexity of what we are facing.

Research Square: Does the Immune System link Childhood Trauma to Adult Mental Illness

DaVinci Labs: Gut, Immune, Brain Triad

NIH-funded researchers discovered that people with disorders traditionally thought to be distinct -- autism, ADHD, bipolar disorder, major depression and schizophrenia ----share common genes.

TedxTalk @ University College London -- Professor Graham Rook on our microbial partners and the "Old Friends Hypothesis"

Old Friends Hypothesis, the Immune System & Mental Health

Duke University: The Gut Brain Connection

The evidence linking mental health to the immune system keeps piling up.

Because injuries to the immune system come from many and varied sources this may help to explain a wide range of presenting histories -- from the TRAUMATIC to the MUNDANE.

Further, if there was ever a need for INDIVIDUALIZED MEDiCINE -- this is it.

BANDWIDTH SHORTAGES & KNOWLEDGE GAPS CALL FOR POLICY-MAKING

12/2/2019

There are 4 BIG things the Mental Health Profession needs to do:

Science Up
Incorporate Strength-Based, Person-Centered Care
Acknowledge the HUGE GAPS in their Knowledge Base
Refuse to Allow themselves to be used for purposes of justifying PUNISHMENT.

So most clinicians and forensic evaluators are not totally oblivious to concerns of the above -- BUT the full ramifications of those concerns are largely not appreciated.

  THE BOTTOM LINE: It takes time and energy to THINK these issues through -- and most clinicians and evaluators are so busy pedaling or trying to make a living that they don't have time for that.

       Our Researchers are certainly RINGING THE ALARM BELLS -- but the STRENGTH OF THAT BELL often depends less on the SCIENCE and more on the INTERNAL POLITICS of the American Psychiatric Association and their propriety interests in an out of date and dangerous DSM.

   Several Countries, including the US are engaged in FOCUSED Translational Research efforts -- bringing research to clinical practice.

   Translational Research is a VITAL PIECE of our HEALTHCARE SYSTEM that has to be greatly expanded -- primarily @ the FEDERAL LEVEL.

However, States could begin Demonstration Projects such as developing clinician-researchers with Support from appropriate Universities (examples can be found in the UK).

Finally a word about Forensic Psychiatry in the Criminal Justice System -- truly, no good deed goes unpunished.

Sadly, for a lot of Forensic Psychiatry -- "I was just following orders" -- is the "raison d'etre" for:

a lot of "anti-social personality disorder" diagnoses and
ultimate punishment, including death.

As a group, people get pretty amazed by each other. On the one hand, many people might be amazed at how "disorganized" I am.

On the other hand, --- "Mental Health Profession -- Do you just NOT have any CRITICAL THINKING SKILLS?"

OMG-- we MUST provide more Support in Translational Research and Ethical Decision-making to the Mental Health Profession -- and a lot of that needs to start with policymakers.

If the Mental Health Profession & Forensic Psychiatry had the BANDWIDTH to reform themselves -- THEY WOULD.

They haven't reformed themselves & they don't have the BANDWIDTH to do it.

What does that mean for policy makers?

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