Author: Terence Blackwell Jr., L-BCBA, SAS
In partnership with Core Solutions

Last summer, I presented at a national health-related conference. The topic was originally supposed to be on the future of managed care in the intellectual and developmental disabilities (IDD) field, but where it landed surprised me. In preparation for the presentation, I interviewed several prominent leaders in the field of IDD and autism spectrum disorder (ASD) on what they thought would be the impact of managed care. After those interviews, it became apparent the future for IDD will likely not be defined exclusively by managed care. While agreeing that managed care will lead to huge changes, there are other factors to consider. I now expect the possibility of increasing pressures to return to large-scale medical model institutions.

To even consider this as possible is alarming, given the tragic history of such IDD care including the Willowbrook travesty. Why do I think we could once again see institutions like Willowbrook? There are three predominant reasons I focused on during my presentation.

First, the effectiveness of advocacy was largely dismantled by the state and federal government regulatory authorities over the past 40-plus years. In the early days of deinstitutionalization, parents and siblings of people with disabilities were greatly involved in setting up nonprofit organizations and advocacy groups that helped spur the development of successful group homes and promoted deinstitutionalization. But the government was very effective at telling these operators that while the work to provide family members with good homes and community integration was commendable, these operators should turn the now multi-million-dollar businesses over to “professionals” to run the businesses.

By design, I don’t think this was intended to discount the voices of advocates. But the effect is significant in that you now rarely have parental and sibling involvement at the leadership levels of community services IDD organization management. In fact, in New York, there was an executive order that essentially capped compensation of any professional running a Medicaid-funded organization at low levels compared to the compensation for those operating educational and health care organizations. This legislation had a substantial negative impact on efforts to bring leadership into the field. The executive order lasted for the better part of a decade, largely because there was no effective advocacy voice.

The second reason I highlighted in my presentation was that I believe more than half of the country’s IDD organizations still perform recording of attendance, progress tracking, client notes, and other key documentation needs by antiquated means. When the Affordable Care Act was signed into law in 2010, there was no money available to IDD-focused nonprofits to adopt electronic health records.

As a contrast, at that time, I was in New York City and serving on a committee that dealt with one of the larger health systems in the city comprised of an independent network of affiliated hospitals that are a part of the New York City operating budget. We were tasked to integrate behavioral health — i.e., mental health and substance use disorder services — clients into the hospital system. The first bucket of money we received from the federal government was about $700 million. About six months later, we were still wrestling with the legal issues relative to records access, so the government sent another $400 million. Money was flowing like water through a firehose. When I left that committee a year and a half later, the executives of the nonprofit groups and health care organizations were still faxing progress notes back and forth between the various hospital sites because no one could figure out the permissions for records access issues.

As I was leaving a meeting of the committee one day, something dawned on me. At the time, I was the chief operating officer for a large New York City nonprofit human services agency, S:US Inc., which was essentially split evenly between providing services for people with developmental disabilities and behavioral health challenges. We did not receive a penny to go toward investing in IDD electronic records. Nevertheless, somehow, some way, IDD and ASD provider agencies found a way to fund rudimentary electronic health records (EHRs) for their organizations. Unfortunately, some of these systems are now very dated, and the technology is no longer sufficient to serve as the organization’s backbone for operations.

The third reason I highlighted in my presentation is providers of services to people with intellectual disabilities generally do not know their true, detailed operating costs. For example, if a major health insurance agency had come up to me while I was still a CEO of a large nonprofit organization, said they wanted to buy 20 beds for a year from us, and asked what we would charge them, I might be able to quote what the state was paying us and request 10% more than that figure. If the payer asked me to justify that amount based upon what it cost to support those beds, that would be a significant challenge. Nonprofit IDD organizations have essentially never completed the homework needed to establish a cost-based methodology for the services provided. We don’t necessarily know key metrics like training and utility costs per square foot or recruitment and staffing costs inclusive of fringe benefits and turnover rates, which can be particularly difficult to calculate when the people we support have severe problem behaviors and levels of staff turnover remain high.

Put those three issues together — dismantling of advocacy, lack of funding of electronic solutions, and a complex cost structure — and I believe you are looking at the major reasons why IDD is not prepared for entry into managed care. And I believe we face the risk of a return to large-scale medical-model institutions.

Why do I envision this for the future of IDD unless something changes soon? There will undoubtedly be people who say such a return will never happen because of reasons like the passing of the “Olmstead Act” and difficulty envisioning the return to institutions the size of Willowbrook, which had about 5,000 beds on its “campus.” There are certain factors that may prohibit the immediate return and rise of institutions, but over the long run, the best predictor of future behavior is often past behavior, and putting people into large institutions is how we as society dealt with the issue of persons with IDD for centuries.

That’s why I’m concerned that we’re potentially going back to systems with a first-blush appeal because they are easy to administer, can take care of a large number of people, and are under a medical model. It’s a lot easier to medicate somebody’s behavior than it is to get them involved in an active treatment program of behavior reduction. A program like that takes significant effort, expertise, and time.

Despite our field’s significant challenges, we’ve observed increased efficiency over the past few decades, and now we will need to take steps to secure this position and achieve other improvements as we move into managed care. We can all help the organizations, and ultimately the individuals we serve, by focusing on three areas: further improving efficiency in our operations, measuring and tracking costs, and further improving outcomes with the use of advanced technology.

Investigate taking advantage of advanced EHR technologies like embedded workflow, care coordination interface, and rules engines to raise efficiencies, move to more client-centered services with smart homes, use portals and kiosks, and go to a single, well-integrated, complete source of information on individuals served. Incorporate evidence-based practices and clinical decision-support solutions to improve outcomes and measure costs across locations and programs. As artificial intelligence (AI) and machine learning solutions mature, they can be incorporated as well. This addresses the need to improve performance and profits while capturing better cost data.

For advocacy, do not forget the parents and siblings of the people we serve. As organizations deal with the changing seas of funding and care, engage the communities of people you serve inclusive of their families. Train your advocates on how to effectively advocate and support society’s most vulnerable population. Our field came into existence through the voices and political pressure brought by mothers and fathers. It is time to re-engage that audience in meaningful, sustainable ways.

With aggressive steps made here, we can meet managed care head on, and head off the failed IDD care delivery methods of the now distant past.

Terry’s bio/image: https://blog.coresolutionsinc.com/author/terence-blackwell-jr

The Vital Role of Peer Support Specialists During a Mobile Crisis Visit

In times of crisis, the need for immediate and comprehensive behavioral health support is paramount. Mobile crisis visits play a crucial role in addressing urgent situations, and the integration of certified peer support specialists during these visits is proving to be a transformative approach.

Certified peer support specialists bring a unique skill set with lived experience to support their work, which builds client rapport and trust. This contributes to filling the behavioral health therapy gap during mobile crisis interventions, giving a client the tools they need to continue care, and providing a road map that supports the recovery journey.

BHL has compiled a list of six reasons why certified peer support specialists should always be integrated as part of your mobile crisis team:

1. Lived experience: A beacon of understanding in crisis – Peer support specialists bring a profound sense of empathy and understanding to mobile crisis visits through their lived experiences. Having faced their own mental health challenges, they create a connection with individuals in crisis, offering a beacon of hope and shared understanding in times of extreme vulnerability.
2. Skill building and coping strategies: Immediate support for crisis moments – Crises demand immediate coping strategies. Peer support specialists are adept at providing on-the-spot skill-building exercises tailored to the individual’s needs. These practical approaches help individuals navigate the intensity of the crisis and lay the foundation for continued coping beyond the immediate moment.
3. Cultural competency: Addressing crisis with sensitivity – Cultural competency becomes even more critical in crises. Peer support specialists, often possessing diverse backgrounds and experiences, can navigate the intricacies of cultural differences with sensitivity. This ensures that crisis interventions are culturally sensitive, fostering trust and effective communication during these challenging moments.
4. Complementary support: Augmenting crisis intervention teams – Integrating peer support specialists into mobile crisis intervention teams enhances the overall support provided. Their unique perspective adds a complementary layer to the skills of behavioral health professionals, creating a more holistic and adaptable response to crises.
5. Community integration: Building supportive networks amid crisis – Crisis moments can be isolating, exacerbating feelings of loneliness. Peer support specialists work towards community integration even during crisis visits, encouraging individuals to reconnect with their support networks. This emphasis on community reinforces the importance of social connections in the recovery process.
6. Advocacy and guided navigation: Navigating the crisis landscape – Navigating a mental health crisis can be overwhelming. Peer support specialists act as advocates, guiding individuals through the crisis landscape. Their presence ensures that individuals receive the necessary support during and after the crisis, facilitating access to appropriate resources and services.
7. In the urgent and sensitive realm of mobile crisis visits, peer support specialists emerge as invaluable allies. Through their lived experiences, skill-building capabilities, cultural competency, complementary support, community integration efforts, and advocacy, these specialists significantly fill the behavioral health therapy gap during critical moments. As we continue to prioritize immediate and holistic mental health care, the integration of peer support specialists in mobile crisis interventions proves to be a pivotal step towards a more compassionate and effective crisis response system.

As Pennsylvania pushes to legalize recreational marijuana, recent research suggests doing so could have harmful effects for adolescents, including a potential increase in suicide.

The study, “Cannabis use disorder, suicide attempts, and self-harm among adolescents: A national inpatient study across the United States,” examined the association between cannabis use disorder (CUD) and suicide/self-harm in a large, nationally representative sample of hospitalized adolescents. It found that adolescents with CUD were 40 percent more likely to experience a suicide attempt or self-harm.

Although the inpatient study does not directly tie an increase in adolescent suicide to legalization of recreational marijuana, there is an association between marijuana legalization and the increased risk of cannabis use disorder among adolescents. As more adolescents experience CUD, then, the potential for more suicides also increases.

In his 2024-2025 Budget Book, Governor Shapiro, acknowledging that all of Pennsylvania’s neighboring states except West Virginia have legalized recreational marijuana, says now is the time for the commonwealth to do so as well. His budget proposes legalization of adult use marijuana effective July 1, 2024, with sales within Pennsylvania beginning January 1, 2025.

The governor’s plan estimates about $14.8 million in revenue in the industry’s first year of operation, with more than $250 million in annual tax revenue expected once the industry is established.

In its review of the inpatient study, the Recovery Research Institute (RRI) suggests policymakers develop policies and funding structures that appropriately educate the public about the risks of cannabis use, and support those who are currently using, as a way to potentially help reduce the public health burden of cannabis use and suicidal behaviors among adolescents.

For treatment providers, RRI points out that cannabis use was uniquely associated with suicidal behaviors among adolescents being treated in an inpatient setting over and above well-known risks such as depression. Furthermore, those with both CUD and depression were at an even greater risk, concluding, then, that it is likely helpful to conduct thorough screenings for each of these issues if an individual presents with one of them.

The governor has proposed millions of dollars to address Pennsylvania’s growing mental health needs. With legalization of recreational marijuana seemingly inevitable in the commonwealth’s near future, even more resources will be needed to address the inevitable substance use disorder (SUD) and mental health issues Pennsylvanians of all ages will likely face following legalization. With a quarter of a billion dollars expected in eventual annual revenue from legalized marijuana, a significant portion of that sum must be committed to SUD and mental health treatment providers.

By Jason Snyder, Director, Substance Use Disorder Treatment Services, BH Division, RCPA

In September 2023, the Substance Abuse and Mental Health Services Administration (SAMHSA) released a report, “Recovery from Substance Use and Mental Health Problems Among Adults in the United States.”

Although the definition and concept of recovery from addiction have been morphing for some time, the self-reported data contained in the report, coupled with SAMHSA’s definition of recovery, lays out starkly that what is considered recovery today is far different from what it has been considered historically. In some ways, it begs the question, then, “What is the purpose of addiction treatment?” What are the implications for addiction treatment providers, who for decades have operated with a mission of helping their patients stop their use of drugs and alcohol?

Using data from the 2021 National Survey on Drug Use and Health (NSDUH), SAMHSA’s report shows that 70 million adults aged 18 or older perceived that they ever had a substance use or mental health problem. For substance use specifically, of the 29 million adults who perceived that they ever had a substance use problem, 72 percent (or 20.9 million) considered themselves to be in recovery or to have recovered from their drug or alcohol use problem (see SAMHSA’s press release).

Of the 72 percent who considered themselves to be in recovery or to have recovered from their drug or alcohol use problem:

• 65 percent reported using alcohol in the past year;
• 68 percent reported using marijuana in the past year;
• 60 percent reported using cocaine in the past year; and
• 61 percent reported using hallucinogens in the past year.

Curiously, it doesn’t appear that respondents were asked whether they used illicit opioids in the past year.

To the traditional addiction treatment provider and many in the recovery community today, recovery and drug and alcohol use can’t co-exist. One possible but unlikely explanation for the SAMHSA-reported data is that all of the respondents who identified as being in recovery but having used drugs or alcohol in the past year is that their recovery began within the last year. This would presume that their definition of recovery includes abstinence. But this is not likely. Consider SAMHSA’s definition of recovery:

“Recovery is a process of change through which individuals improve their health and wellness, live a self-directed life; and strive to reach their full potential.”

No mention of abstinence from drugs and alcohol. What this means is that for millions of people, recovery can and does include moderated use of drugs and alcohol.

In 2004, SAMHSA’s Center for Substance Abuse Treatment said, “Treatment for substance use disorders is designed to help people stop alcohol or drug use and remain sober and drug free. Recovery is a lifelong process.” Twenty years later, it’s a far different message coming from SAMHSA.

As recently as 2019, the Pennsylvania Certification Board defined recovery as highly individualized, requiring abstinence from all mood and mind-altering substances, and may be supported by using medication that is appropriately prescribed and taken.

Talk about evolution and conflict.

Nora Volkow, director of the National Institute on Drug Abuse, said “Healthcare and society must move beyond this dichotomous, moralistic view of drug use and abstinence and the judgmental attitudes and practices that go with it.”

So what does this mean for addiction treatment providers? What, then, is the purpose of addiction treatment? One managed care organization in Pennsylvania recently talked about the purpose of addiction treatment in much the same way as SAMHSA defines recovery, addressing health, home, purpose, and community. This would seem to mean that providers are now expected to address not only addiction but myriad social determinants of health as well. In fact, it is what payers expect providers to do today.

This is a sea change. The addiction treatment system was not built in this way. This is not to say that it is not evolving or cannot evolve along with the definitions of treatment and recovery. But to do so will require much broader systemic change than philosophical and cultural changes within addiction treatment organizations. Regulation and payment structure must also change to reflect the changing expectations and demands placed on providers.

(shared by the mother of two sons with intellectual & developmental disabilities/autism, Nechel spoke at the Capitol at one of our recent rallies)

My name is Nechel. My education is in art education. I am no doctor, so do your own research, I can only speak from my experiences, and would like to share them with you.

I have two sons, 22/21; both are on the autism spectrum. My 22-year-old was diagnosed at three years and has high functioning Asperger’s with severe generalized anxiety. Secondary diagnoses are sensory integration disorder, OCD, ADHD. My 21-year-old was diagnosed at 11 months old. He actually has two primary diagnoses – severe autism with aggression and ID. Secondary diagnosis – SI, OCD, language delay, ADHD.

Both sons struggled with childhood sicknesses like most do, including allergies, RSV, croup, ear infections, sinus infections, etc. My youngest son suffered more with these illnesses, which exacerbated the aggressive behaviors! He was taking an average of eight antibiotics per year! He has had six sets of ear tubes, tonsillectomy, sinuses were cauterized, but still needed to be on antibiotics several times a year! His health was impacting behaviors and therapies profoundly. I went on a mission to get my sons healthier.

We have tried many therapies and services over the years, both outpatient and in school. We have utilized Occupational Therapy, Speech Therapy, and assistive technology for language including devices such as “Say it Sam,” and Prologue2go. We have explored/accessed BCBA, BSC, TSS, MT, talk, special school programs, social groups, different foods, and therapies such as play, equine, and music. We have been to specialists, and experimented with homeopathic medicine, and many medication trials!!

I have been using all natural items I have researched in determining each boy’s needs. I capsulize several items for ease of dispensing and avoiding sensory issues. The silver tastes like water so I add to drinks. My sons use immune boosting supplements such as a multivitamin, D3, B-complex, Zinc, Magnesium, Probiotics, and Melatonin. For anxiety, one of my sons uses CBD, Bergamot tablet/roll-on, and Valerian root. My 22-year-old son is now off all prescription medications. My 21-year-old has now gone almost five years with no need for antibiotics, and five fewer prescriptions!

Both use natural remedies such as Mullein EO, sovereign silver liquid/nasal spray PRN for allergies. At the onset of any illness symptoms, we use oregano, elderberry, increase D3, increase Zinc, C, and sovereign silver (liquid, spray).

Due to dietary selectiveness, I utilize a vegetable and fruit-based protein powder with probiotics to bake cookies/brownies. Utilize whatever way works for your child. Amazing flavor, several flavor options, with no chalkiness! I replace flour with this product, undetected!

One experience I would like to share is extraordinary. I learned about Red Pine Needle Oil. Several studies on this refer to use in people with autism, Alzheimer’s, and Dementia, in regards to language, mental clarity, and neurological transmitter repair. In the studies I reviewed, EVERY participant showed some type of improvement! So I had nothing to lose! My oldest son, at age 20, had very limited functional language. He spoke in one word responses, and never wrote anything independently. On the second day using red pine needle oil, he spoke independently and clearly, “Pennsylvania polka calendar!” On the fourth day, he said “I love you” to me for the first time ever, independently and clearly! By the second week, he was writing independently, legibly, and spelled “beach hotel!!!” Of course, his favorite place on Earth. Since then, we hear new language all the time. He writes many requests/words!!!

What if we utilized these methods alongside traditional therapies? What if you had a child to work with that was healthier, clearer thinking, lower anxiety, with behaviors lessened? How much more effective would these traditional therapies be?? With this holistic approach, how much more progress could we attain with our amazing children?? Take it day by day! Start with one product and grow it! Don’t forget, you are all warriors!

–Nechel