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There are many stakeholders in the broad substance use disorder (SUD) landscape who are nervous about how US Department of Health and Human Services Secretary Robert F. Kennedy Jr. will steer policy. But from a treatment perspective, given his beliefs and experiences, he could drive significant improvement in the way those Americans who suffer most severely from SUD are treated.

In January, after President Trump took office and nominated Kennedy to be secretary, many SUD treatment providers and advocates, along with several media outlets, immediately raised concerns. Pointing predominantly to the 45-minute documentary Kennedy made as part of his early campaign for the presidency, some advocates feared that if he was confirmed as secretary of HHS, he would use his personal experience and preferences to unduly influence the country’s SUD treatment policy away from evidence-based treatment, including the use of medications like methadone and buprenorphine.

In “Recovering America – A Film About Healing Our Addiction Crisis,” Kennedy, who is in long-term recovery from heroin addiction, featured “healing farms” – a form of therapeutic communities – as successful models for treating SUD. Therapeutic community is a treatment approach built on the premise that for recovery to occur, a change in lifestyle and social and personal identity is vital. He said that if he was elected president, he would open hundreds of healing farms across the country.

Of course, he did not become president, but he was confirmed as secretary of HHS in February.

Kennedy’s support of healing farms is not the only concern of some advocates. The pathway to his own recovery – a 12-step program – and his staunch support and continued participation in that program, which many criticize for its abstinence-only philosophy, including its rejection of medications to treat SUD, is also a red flag.

An Opportunity to Improve What Already Exists

But Kennedy actually has an opportunity to leverage his experience and philosophies in a way that improves the predominant residential treatment model in place today for those with the most severe and advanced disease. This does not mean a wholesale shift toward healing farms or even therapeutic communities (though in a world of individualized care and personal choice, there can be a place for these types of treatment models). It should, however, include policy that forces increased funding of residential treatment settings, in order to provide adequate lengths of stay and meaningful integrated mental and physical health and recovery support services throughout the continuum – including, when necessary, skilled nursing facilities that accept patients whose treatment includes narcotic medication, and appropriate, safe, and accessible recovery housing. A stronger continuum of care for those suffering the most severe SUD can enable social connectedness, sense of community, belongingness, and meaning and purpose. Not only are these foundational goals of therapeutic communities and values Kennedy holds in high regard; they are also key tenets of the Substance Abuse and Mental Health Services Administration’s (SAMHSA) working definition of recovery. As HHS secretary, Kennedy oversees SAMHSA.

In Kennedy’s documentary, he walked the streets of San Francisco and showed footage of Philadelphia’s Kensington neighborhood. Living in the age of fentanyl and xylazine, the individuals from these streets who make it to treatment are typically homeless, have extreme physical comorbidities, and have suffered unimaginable trauma and mental illness. In other words, they are the most ill. Yet, in Pennsylvania, we often see an aggressive push by payers to quickly move them from the highest levels of care, where patients whose acute biomedical, emotional, behavioral, and cognitive problems are so severe that they require primary medical and nursing care, to lower levels of care well before their clinicians believe they are ready.

Many policymakers, pundits, and payers will point to the high cost and lack of evidence to support such lengths of stay in residential settings. But any argument that the research does not support long-term residential treatment should be carefully scrutinized, in particular because little research exists that examines outcomes for those with the most severe SUD. If Pennsylvania policymakers and payers have such data, they should bring it forward.

Ensuring and Improving Access to Medication

What is indisputable is the fact that medications to treat opioid use disorder not only reduce overdose deaths, but they also increase engagement and retention in treatment, increase abstinence from opioid use, and improve other quality-of-life metrics.

But Kennedy’s position on several other issues has advocates concerned about his position on medications like buprenorphine and methadone.

From within the mental health and SUD advocacy world, one of the strongest endorsements Kennedy received ahead of his confirmation was from his cousin Patrick Kennedy, a former US Congressman from Rhode Island and staunch SUD and mental health advocate who has been in recovery 14 years. Patrick Kennedy’s treatment and recovery path included the use of buprenorphine and naltrexone, as well as medications to address mental health.

In a 2016 story in the Seattle Times, Patrick Kennedy said, “We’re hogtied because many of those influencing addiction policy in this country come from the 12-step culture, which says abstinence is the only true form of recovery. We’re losing a lot of people on the altar of that type of rigid ideology.”

Even closer to home, Robert Kennedy experienced the death of his younger brother David, whom he described as his best friend. David Kennedy was 28 years old when he died in 1984. My younger brother Todd was 28 years old when he died in 2005 from a heroin overdose. Less than two years later in September 2007, my 25-year-old brother Josh, the youngest of my parents’ three children, died of a drug overdose. I have often said that my parents, both of whom I am grateful to still have today, would much rather have their two dead sons alive and using buprenorphine or methadone, with a chance to define their own lives and recovery, than lying side by side in a graveyard in Cambria County, PA. I can’t imagine that Robert Kennedy feels any different about David – that if there was something that could have been done to give him another day and a shot at recovery, he would have staunchly supported it. In preserving and enhancing access to medications, Kennedy has the opportunity to give to parents, siblings, and other family members and loved ones what he and I no longer have.

Walking the Tightrope

In my work, a key component of advocacy on behalf of SUD treatment and those who need it is an ability to put aside my own recovery path, and acknowledge and support other pathways that I might not choose but can nonetheless be effective. In fact, this is in large part what a professional peer does. And for Kennedy, as evidenced by his documentary, the peer is an indispensable, integral part of the recovery process; not just in the healing farm setting, but in justice-system diversion programs as well, for example.

Related to my recovery from SUD, if you want the type of life I am striving to live and want to know what I do, I am willing to show you. My professional role, however, does not include forced imposition of my personal philosophies on you. To find such a balance requires open-mindedness, which is also a bedrock principle of the Alcoholics Anonymous (AA) program Kennedy lives. The challenge with open-mindedness is applying it in all of life, not just within the parameters we choose to live. In doing so, we potentially attract others to that lifestyle.

Kennedy obviously is not simply an advocate or a well-known “old-timer” in a local area of AA meetings. He is the top policymaker for HHS and SAMHSA. From the highest, most influential platform he has ever had relative to his recovery, he can strike the right balance.

With a better funding approach, Kennedy can infuse aspects of a treatment modality and recovery support program that has worked for many, including himself, into the system we have in place today. In doing so, he can improve treatment broadly for those with the most severe SUD, and support and advance the integral, life-saving role medications play, all while serving as a role model for what recovery may look like for some.

For the sake of all of those who are still suffering from this disease, including families, I hope he can do it.

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Interested in learning more about how to integrate psychedelic therapy into your future services?

BrainFutures and the University of Berkley’s Collaborative for Economics of Psychedelics are hosting a “Provider Roundtable: Integrating Psychedelic Therapies into Healthcare” on April 1 at 12:00 pm EST/9:00 am PST!

The Roundtable will share findings from a new white paper on opportunities and challenges in scaling psychedelic therapy post-FDA approval. You can read the white paper here, and don’t forget to register for the Provider Roundtable to discuss solutions on April 1.

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As I watched Pennsylvania Governor Josh Shapiro give his budget address last Tuesday, it occurred to me that the light Pennsylvania government had brightly shined on the addiction epidemic for nearly the past 10 years has greatly dimmed.

In a speech of nearly 11,000 words, not one of them was “addiction.” Not one mention of treatment. No mention at all of an overdose death epidemic. Over the course of a 90-minute budget address, Gov. Shapiro, a man who likes to “get stuff done,” did not even attempt to take credit for overdose death numbers that are trending downward. He didn’t acknowledge them at all.

Granted, the Pennsylvania Department of Drug and Alcohol Programs (DDAP) continues to release pots of opioid settlement and federal money, including State Opioid Response (SOR) funding, into the behavioral health ecosystem, though not all of it is available to DDAP-licensed treatment providers. Counties also continue to spend opioid settlement dollars from multiple sources, including a national settlement with the three largest pharmaceutical distributors that netted more than $1 billion for Pennsylvania.

In arguing that everyone else is legalizing adult-use recreational marijuana, so Pennsylvania should, too, the governor ignores the evidence of the harms of marijuana, including a link between legalized adult recreational marijuana and an increase in adolescent suicides, as well as the broader implications for addiction treatment such that not one dime of the $536,000,000 in estimated Fiscal Year 2025/26 revenue is proposed to be directly allocated to DDAP. Although it appears recreational legalization is inevitable at some point, failing to acknowledge its potential to harm some Pennsylvanians is disingenuous.

Dig a little deeper into the budget, and it looks no brighter for addiction treatment providers.

Behavioral HealthChoices — the name for Pennsylvania’s Medicaid managed care program for behavioral health — currently is in a financial crisis. Pennsylvania counties and behavioral health managed care organizations (BH-MCO) are reporting to be significantly underfunded due to a Department of Human Services’ (DHS) actuarial error made in calculating the effects of the unwind of the Medicaid rolls post-Covid. The underfunding is affecting the counties’ abilities to meet contractual obligations to provide behavioral health services. In other words, the $6.3 billion comprised of state and federal dollars in the current fiscal year (2024/25) budget (see p. 104 of 372 of DHS’s budget book) for Behavioral HealthChoices capitation — capitation being a form of payment based on a complex formula that determines an amount of money needed per Medicaid recipient per month — is not enough money to pay for addiction and mental health treatment for everyone who wants and needs it.

Although we see an 18 percent increase in the HealthChoices capitation line item that amounts to $660 million in state dollars in the governor’s proposed executive budget, significant questions are still unanswered and even bigger concerns remain.

For example, we do not know how much of the 18 percent increase is earmarked for Behavioral HealthChoices, which is concerning because the Physical HealthChoices program also is underfunded, and the Physical HealthChoices program is a significantly higher expenditure. Estimates suggest that the Behavioral and Physical HealthChoices systems combined need an additional $2.5 billion (state and federal combined) in the current calendar year, which is partly funded by two separate fiscal year budgets, to meet their obligations to Pennsylvania’s most vulnerable. There is a $230,000,000 supplemental payment in the proposed budget, which would help to address the immediate need for additional funds in the current fiscal year, but we are hearing only a small percentage of this is for the HealthChoices issue.

As a result of the underfunding and uncertainty, BH-MCOs and primary contractors have announced to addiction and mental health treatment providers that they will not receive any increases in reimbursement rates in 2025, despite escalating provider costs. At the same time, in certain regions of the Commonwealth, addiction and mental health treatment providers are beginning to report increasing challenges in getting appropriate treatment authorized (e.g., decreased lengths of stay, increased denials). Although anecdotal, RCPA will continue to have these discussions and look to substantiating data.

The current HealthChoices crisis has been building since early 2024 and has caused much anxiety. So far, the proposed 2025/26 budget only exacerbates the worry. Add in the federal Medicaid and grant funding uncertainty coming out of Washington, DC following recent executive orders that potentially put funding streams like the Substance Use Prevention, Treatment, and Recovery Services Block Grant and SOR dollars at risk, and the calamity grows exponentially. Right now, we are looking at a real possibility of ongoing behavioral health service cuts that would be akin to rationing of care.

At this point, I am left with a few fundamental questions. How is $6.3 billion not enough to provide behavioral health services — addiction and mental health treatment — to Pennsylvania’s Medicaid population? How could the state have been so wrong on its calculations? How sustainable is a behavioral health system that needs at least upwards of $7 billion per year? Does the legislature have an appetite for such a system?

And, perhaps most importantly, what are the implications for the future of addiction treatment and the sustainability of the system as we currently know it? Beyond the funding crisis, the field continues to beg for relief from administrative burden and crushing oversight, pleas that have amounted to shouting into the void.

With DHS’s budget hearings coming up in early March in front of the Senate and House Appropriations Committees, I would expect the legislature to also be asking these same questions. Stay tuned.

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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. Encouragingly, substance use recovery was more prevalent among adults who received substance use treatment.

To the traditional addiction treatment provider and many in the recovery community today, recovery and drug and alcohol use cannot 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.

When I began my recovery from substance use disorder (SUD) nearly 12 years ago, I went to treatment with the intention of stopping my drug use. I came to believe at that time from those who helped put me on this path, including those within the treatment facility as well as peers outside of it, that the foundational element of recovery was abstinence from all drugs. In fact, my first few years of recovery were so philosophically rigid that I even believed medications to treat opioid use disorder (MOUD) disqualified an individual from recovery.

I’ve drastically changed my views and beliefs since those early years, because I’ve seen the power of MOUD and, conversely, the grave danger anti-MOUD stigma poses. Sadly, though, many still believe the way I once did. I’ve held true to my own definition of recovery, which does include the foundational element of life without drugs or alcohol. But I am not so self-righteous as to believe that those who choose another path or definition of recovery should be discounted or forced to “recover” in a particular way.

For many in the treatment system and recovery community, abstinence remains a cornerstone of recovery. But for many other stakeholders in the broader addiction treatment ecosystem — payers, regulators, and policymakers in particular — although abstinence may once have been the goal for them, the purpose of treatment and definition of recovery have moved far afield of those historical tenets.

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 philosophically and operationally? If the purpose of addiction treatment is not necessarily to stop drug and alcohol use, what is it? 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 mental and physical health, too, at least to some extent, as well as myriad social determinants of health. In fact, it is what payers expect providers to do today.

This is an attempt to integrate various human services and incorporate harm reduction into the addiction treatment system, and it is a sea change. The addiction treatment system was not built in this way. This is not to say that this movement is wrong, or that the treatment system is not evolving or cannot evolve along with the definitions of treatment and recovery. But to do so will require an ongoing cultural shift with which many in the treatment system — from the front line to the CEO office — struggle. It will also require a much broader systemic change than simply within addiction treatment organizations. Regulation, oversight, and payment structure must also change to reflect the changing expectations and demands placed on providers.

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Recovery Community Divided Over Pending Legislation That Would Radically Change SUD, Mental Health Peer Services in PA

Nothing about us without us.

That is the mantra that emanates from the recovery community any time policy decisions are being considered that would affect those seeking or already in recovery from substance use disorder (SUD) or mental health issues.

The thinking goes that no one knows the plight and the needs of the person seeking recovery better than those who have sought and found recovery themselves. The peer profession is based largely on this tenet. I can attest to the power of the peer. Without those with lived experience helping me early in my recovery and, in fact, to this day, my life likely would not have followed the path that it has.

“Nothing about us without us” is a spoken tie that binds, and often times it’s a rallying cry in an us-against-them mentality. It’s no different from any other special interest, including the addiction treatment providers who I represent, rallying their own against perceived threats from outside influences. It’s what we as advocates do.

But that tie is being tested with a yet-to-be-introduced bill – called Promoting Recovery, Opportunity, Professionalism, Ethics, and Longevity (PROPEL) – that would radically change the way peer services are provided in Pennsylvania. It is being tested because the bill lacks widespread support within the recovery community. Few in the recovery community had any hand in shaping it. In fact, from the many conversations I’ve had with those in the peer community, most had no idea this bill was even in the works. Many probably still don’t know it’s been written.

Licensing, Regulating, and Funding All Peer Organizations

Although the cosponsorhip memo describes the pending bill as a means to reduce overdose deaths by developing a sustainable funding stream for peer support services providers, it reaches far beyond funding. It does intend to create a sustainable, consistent revenue stream through Medicaid reimbursement for SUD and mental health peer services, though on the mental health side of the behavioral health equation, Medicaid reimbursement for certified peer specialist services (CPS) provided by peer organizations licensed by the state Department of Human Services has been a reality as a Medicaid state plan service for nearly 20 years. On the SUD side, DHS is seeking to add certified recovery specialist (CRS) services to the state plan. When a service is part of the state plan, behavioral health managed care organizations are required to pay for the service (As a point of clarification — in Pennsylvania, CPS’s have lived mental health experience and provide mental health peer services; CRS’s have lived SUD experience and provide SUD peer services. Whether we should continue to silo the two in the recovery and treatment worlds and beyond is an important discussion for another time).

This bill would change the current mental health peer organization licensure process, while creating new and separate licensure processes for mental health peer organizations and SUD peer organizations. Regulations to govern peer services would be promulgated and largely drive the licensure processes. The bill also conflates mental health drop-in centers, crisis centers and recovery community organizations (RCOs), a point of contention among operators of RCOs.

For RCOs – defined by SAMHSA through its Peer Recovery Center of Excellence as a nonprofit organization founded and led by people with direct lived experience with substance use challenges and recovery – funding has been much tougher to come by when compared with licensed mental health peer services providers. With the biggest source of funding for many RCOs being grants, a consistent, sustainable funding stream would be welcomed. But the challenges of licensure and regulation, which bring significant burden in the form of oversight and regular audits, has some in the recovery community, including those operating RCOs, concerned what it could mean to their survival and ability to be flexible and adapt to their community’s needs.

Prohibiting Treatment Providers From Providing Peer Services

The bill’s supporters also say its intention is to protect the integrity of the individual peer professional. With this bill, all peer services would be co-opted by licensed peer support organizations, meaning no treatment providers – for-profit and nonprofit alike — could offer any type of peer services unless they contracted with a licensed peer organization. In fact, any for-profit company, whether clinical or otherwise, could not provide peer services. The rationale behind this piece of the bill, at least what has been communicated to me, is that peers are being made to do work well beyond or below their scope (e.g., fulfilling duties of behavioral health technicians as opposed to peer professional responsibilities), which sometimes forces peers into unethical situations. Proponents of the bill haven’t been shy about saying they have video recordings of peers sharing such stories.

Substance use disorder and mental health treatment providers, many of whom have been providing peer services within their organizations for years, would no longer be able to provide the services as they currently do. Instead, they would be required to enter into a contractual arrangement with a peer support services provider, defined as “an independent, nonclinical, nonprofit organization, including an RCO or mental health peer organization that is led and governed by individuals in mental health and substance use recovery that employs peer support specialists and provides peer recovery support services.” Such a requirement would make treatment providers – trained and educated experts in providing comprehensive services, including recovery services, to any client who is receiving services in their program – beholden to licensed peer support programs, add additional layers of administrative burden, and jeopardize access to peer services.

The bill would also remove any requirement of clinical supervision of peers for reimbursement, thereby removing what can be critical clinical judgement in certain cases where peers lack needed expertise to direct clients to immediate services they may need. In other words, a clinician would no longer be required to oversee a peer in order to receive reimbursement for the services. A peer supervisor would be adequate to be reimbursed for those services.

Paying Peers Commensurate to Their Value

There are some pieces of this bill that I wholeheartedly support. A lot of lip service gets paid to the value of peers, but we don’t see that translating into consistent funding or adequate rates. I would love to see an adequate, sustainable funding model for community-based peer organizations that recognizes the real value of the peer – putting our money where our mouth is, so to speak. And I would love to see peers be used with fidelity in all settings in the way they are intended. I think there is a way to bring all stakeholders together to discuss how to make this happen.

Considering the Optics

There are some pieces of the bill that are obviously concerning, too. Prohibiting treatment providers from providing peer services as they currently do is one. There’s also a small but concerning piece of language in the bill that enables peer services to be reimbursed “as a primary service for individuals with a mild, moderate or severe mental health disorder or substance use disorder and require no other diagnosis, condition or preauthorization.” Without clinical expertise to assess severity of the mental health or SUD issue, how the RCO will know whether an individual seeking services has a mild, moderate, or severe mental health disorder is unclear. But if it’s nothing more than self-diagnosis/self-referral, anyone could claim to have an SUD or mental health issue. Financial incentives have led many organizations astray. Any hint of potential fraud hurts any field, but an already stigmatized profession still regularly fighting for a seat at the table is especially vulnerable.

The recovery community has for years been fighting for credibility and respect, and it has made great strides in doing so. Yet I think many of its leading advocates will tell you there is still a long way to go. Although in my experience it’s rare that any group or movement has 100 percent agreement among itself, the treatment system included, the infighting we have already seen play out in public over this proposed legislation is not a good optic. Rather than elevating the profession, this splintered effort risks having the opposite effect.

I have a personal interest in this issue. I have colleagues and friends who are leaders of the recovery community. Any success I have had during my recovery is mostly because of my recovery community. I am also a CRS, although I have never practiced professionally as one. I have a professional interest, too. I represent treatment providers, many of whom have been providing stellar peer services for years, and I am on the board of the Pennsylvania Peer Support Coalition. In this spirit, I have had many conversations with various stakeholders on this issue, with the intention of eventually convening a large group of all stakeholders. If you want to be part of a broader discussion so that all voices are heard, please email me. I would love to hear from you.

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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

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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.

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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.

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