Stories from Sullivan: The Illusion of Services

A mural on Broadway in Monticello, New York.

 

This is Part 13 in a multipart series examining the opioid crisis. Through a combination of on-the-ground research in affected communities and aggregate data analysis, we give you #StoriesfromSullivan that provide insight into what the opioid problem looks like, how communities respond, and what kinds of policies have the best chance of making a difference.


 

Part 13.
The Illusion of Services

By  Patricia Strach, Katie Zuber, and Elizabeth Pérez-Chiqués

 

From the first day we set foot in Sullivan County, we’ve heard about people who want help but can’t get it. Just about everybody we’ve talked to — parents, social workers, treatment providers, local officials, people in recovery — is frustrated. Many tell a similar story about a lack of available treatment beds. A county official summed the problem up this way: “it’s waiting lists and/or you are getting shipped out somewhere.… [T]o me that’s a big problem, just the lack of beds.”

But, at the same time local officials and families on the frontlines say there are no beds, New York State’s Office of Alcoholism and Substance Abuse Services (OASAS) treatment locator tool shows plenty of open slots: seventy-four opportunities within fifty miles of Monticello, NY (the heart of Sullivan County). “I get emails every day from providers ‘We have beds, we have beds, we have beds,’” one addiction specialist told us. “Sullivan County has beds.… That’s not the problem.”

Beds on paper are often hard to access in person: people who show up at the emergency department are turned away; people who try to get into treatment facilities find there is no one there to answer the phone; and people who want medication-assisted treatment find few doctors who will treat addiction (and those that do aren’t accepting any more patients). It’s hard for a person seeking services, but it’s also hard for providers who want to do more but can’t.

The computer system may be right that there are plenty of treatment beds, but those beds aren’t always available to people who need them — a disconnect that we call the “illusion of services.” Why are services so hard to access? And what can we do about it?

 
Lack of Medically Supervised Detox

People who are addicted to opioids and seek treatment may go to the hospital emergency department for help. Under federal law, hospitals are required to provide appropriate medical care for “emergency medical conditions,” where the absence of medical care could be expected to place the health of the individual in serious jeopardy or serious impairment to bodily functions. Withdrawal is not necessarily considered an emergency medical condition, and many doctors do not believe that detoxification requires a hospital-level of care. In 2008, New York State enacted new guidelines for detoxification, shifting to community-based care for withdrawal. Catskill Regional, Sullivan County’s only hospital, for example, does not detox. Only one hospital in the region does.

Hospitals treat addiction under a medical model of care, where individuals have to be experiencing physical withdrawal before they are admitted. Essentially, people who come to the emergency department for help are sent home unless they are experiencing, as one hospital social worker described, very painful symptoms: “shakes, dilated, sweats, whole body aches, severe body aches, restlessness … body twitching, like their legs will twitch or their arms will twitch, is a sign.… Typically, they are nauseous, they’re vomiting, they have diarrhea.” But, most people leave the hospital before they reach that point.

 

Almost everyone we spoke to talked about the lack of long-term treatment options, with lengths of stay lasting approximately six to twelve months. In Sullivan, two residential facilities closed in the early 2000s, just as the crisis intensified.

 

People who have more complicated cases do have a greater likelihood of being admitted to a hospital, such as patients with comorbid medical conditions — e.g., diabetes, hypertension, pregnancy; with suicidal/homicidal/psychotic states; with no capacity for informed consent; or in danger of seizure or delirium tremens (DTs).[1]

Healthcare providers also know they have a greater chance of getting people into detox if they present co-occurring mental health and substance use disorders, because they can “capture them on the inpatient unit,” where they can stabilize people on medications and then transition them to rehab. However, insurance generally won’t pay for an inpatient mental health stay without an Axis 1 diagnosis, like schizophrenia or other clinical disorders. And substance abuse rehabilitation is purely voluntary. According to one hospital social worker, “[w]e encourage. We educate. We support. But, if they say they want to leave, they can leave. There’s no regulatory standard that says you have to be held here against your will.”

Although federal flexibility allows physicians at hospitals to treat addiction in cases of emergency using medications like buprenorphine, and although a state waiver allows hospitals to expand the number of beds they use to treat addictions, hospitals still turn patients away.

Even though many doctors do not believe that detoxification requires inpatient care, hospitals do not always help patient’s access community-based services. Instead, prospective patients are often told to leave and come back when the symptoms get worse. The head of a nonprofit explained the experience of one man who his organization worked with:

A gentleman … late at night on a weekend, called our peer engagement specialist. [H]is wife wanted him to go to the hospital, so, we’re pretty upfront because if he’s not in withdrawal, if he’s not experiencing withdrawal symptoms they are not likely going to take him. And we ask folks, have you been in withdrawal before, have you experienced any negative consequences when you stopped using alcohol, when you stopped using opiates? We kind of ask them, because if they don’t meet the admission criteria, which has nothing to do with treating addiction — it has to do with health — if they don’t meet that, they are not going through an emergency room, and they’re not getting into a hospital bed. So, his wife was at home alone with this husband who was drinking.… And had a child who was in bed asleep, couldn’t take him to the hospital, and she called an ambulance.… The next thing you know, it’s now two or three o’clock in the morning, my peer engagement specialist gets another phone call, now the guy is in the parking lot at the hospital, so, in my mind that should never happen, that should never, ever happen.

Unlike other chronic diseases or medical conditions, standard protocols for treating people with substance use disorders are not widely known, broadly available, or consistently implemented. “[I]f the guy went with a chest pain, would he have been discharged to the parking lot,” this man wondered. “[H]e came in an ambulance, and there was no family member there, what would they do with him if he was a cardiac patient, or some other patient?”

More than half of US counties lack physicians who can prescribe buprenorphine,[2] leaving thirty-million people without access to medication-assisted treatment. With severe shortages of doctors, mental health professionals, and other addiction specialists, community supports are primarily available in urban and well-resourced communities. But people who want help can still get turned away.

 

In rural communities like Sullivan, short-term residential treatment — which consists of three to six weeks of inpatient care followed by intensive outpatient services — is the only game in town. However, admission criteria make it difficult for people to access even those services.

 

In the meantime, some people require inpatient detox. Opiate withdrawal is dangerous and, in some cases, deadly. People with co-occurring conditions like heart disease, diabetes, epilepsy, and liver failure are at greater risk during withdrawal. But the persistent vomiting and diarrhea associated with opioid withdrawal may result in dehydration, elevated blood sodium, and heart failure even for people without other medical complications.

Doctors, social workers, and treatment providers are often frustrated by what they cannot do. One hospital social worker explained how hard it is to be the bad guy and tell patients to come back to the hospital when their symptoms are worse, and she described their (often angry) reaction: “‘I’m homeless, no car, where do you want me to go, it’s winter, what am I supposed to do?’ and those are valid points! Like, what are they supposed to do?”

 
Restrictions on Inpatient Rehabilitation Services

Almost everyone we spoke to talked about the lack of long-term treatment options, with lengths of stay lasting approximately six to twelve months. In Sullivan, two residential facilities closed in the early 2000s, just as the crisis intensified. And this pattern has replicated itself nationwide, making long-term treatment relatively uncommon everywhere in the United States.

Compounding the limited number of residential facilities are length-of-stay restrictions. Insurance typically does not pay for residential treatment beyond thirty days. Therefore, patients (and their families) must often pay for long-term care out of pocket. One mother estimates she spent $95,000 on eighteen months of rehab for her daughter, while another says she paid tens of thousands of dollars a month. Needless to say, most families don’t have that kind of money.

Instead, in rural communities like Sullivan, short-term residential treatment — which consists of three to six weeks of inpatient care followed by intensive outpatient services — is the only game in town. However, admission criteria make it difficult for people to access even those services.

Generally, we heard about people being turned away from short-term facilities if they:

  • Require medically supervised detox — because withdrawal is often accompanied by unpleasant and potentially fatal side effects, rehabs typically refer out for detox.
  • Fail to meet age and sex requirements for beds — male-only beds are not available to women, for example, and others are reserved for adults only.
  • Exhibit a co-occurring disorder for which they are prescribed benzodiazepines — treatment facilities turn people away when they are on medication for a mental health disorder, even though co-occurring mental health and substance use disorders are common.

These obstacles are exemplified by the story of one mother whose daughter was turned away from the same facility not once, but three times — the first time because her daughter was on antidepressants; the second time because she needed to detox from fentanyl; and the third time because she was detoxed using methadone (not Suboxone). Ironically, a representative from the same facility expressed frustration over their inability to fill ten empty beds.

Finally, people are also turned away if facilities lack the appropriate staff to oversee and manage beds. As one study noted, “while there are many impediments to accessing care, the absence of a workforce that is of sufficient size and adequately trained is a significant factor.” Behavioral health providers have difficulty recruiting and retaining a competent workforce, achieving workforce diversity, and assuring that the workforce delivers safe and effective services. What few people there are who specialize in addiction services are hard to hire, and county governments and nonprofits can’t compete with for-profit providers who can afford to pay higher salaries. So while a bed might be available, if there are insufficient staff to run it, the bed sits empty.

 

Restrictions on Medication-Assisted Treatment

Sometimes, the discussion of beds doesn’t mean actual, physical beds but outpatient treatment options, what are more precisely referred to as “treatment slots.” Although the promise of slots is that they are more readily available, patients have trouble accessing medication-assisted treatment, designed to treat opioid addiction, from doctors as well.

It’s far easier to prescribe opioids than the medication-assisted treatment to help people stop using them. Physicians, dentists, veterinarians, physician assistants, nurse practitioners, and nurse midwives in New York can prescribe opioids, but medication-assisted treatment (methadone, buprenorphine, or naltrexone) requires specialized clinics, trainings, and authorization. Methadone is available only through highly regulated treatment programs, which patients have to visit daily at the beginning. Buprenorphine can be prescribed in physicians’ offices, but it requires a DEA waiver, which includes an eight-hour training for doctors and an additional sixteen hours of online training for physicians’ assistants and nurse practitioners. In addition to limiting which medical personnel can provide medication-assisted treatment, there are limitations on how many patients they can treat. During the first year of buprenorphine certification, physicians can have up to thirty patients under treatment at one time. After a year, they can apply to have the number increased to 100, then 275. While the number may appear sizable, there is no comparable patient limit for prescribing opioids. In Sullivan, this means that most doctors, dentists, and vets can prescribe opioids, but only nine physicians are licensed to provide buprenorphine.

 

We may not appreciate how hard it is for a person with a substance use disorder to say “I’m ready.”

 

Limited access to medication-assisted treatment is not a Sullivan problem or even a New York State problem. It’s a problem across the country. In 2016, less than 4 percent of physicians were waivered to prescribe buprenorphine in the US.[3] It’s not much better now. Of the 55,000 physicians who can prescribe buprenorphine in the US 72 percent are 30 Patient Certified, 20 percent are 100 Patient Certified, and 8 percent are 275 Patient Certified.

Even if every physician prescribed at the limit, there would still be more patients than slots. But most physicians do not prescribe to the limit.[4] Less than half (1,465 out of 3,143) of US counties have a physician who could prescribe buprenorphine, leaving 10 percent of the population (more than thirty million people) without a single prescriber of medications for addiction treatment — the overwhelming majority (twenty-one million) in rural areas.[5]

 

Staffing Shortages

Many parts of the country also lack mental health professionals, leaving people needing help in a real bind. A 2009 study found that more than three-quarters of US counties had a severe shortage of mental health workers. Those shortages are unevenly distributed. Eight-five percent of federally designated mental health personnel shortage areas are in rural locations.[6] Rural counties and high-poverty areas also have the most severe shortages for child psychiatrists. With only two child psychiatrists in the Sullivan/Orange area, we heard time and time again about the years-long waiting list for an appointment.

It is not just doctors (physicians and psychiatrists) who are needed. It is social workers, Credentialed Alcoholism and Substance Abuse Counselors (CASACs), and nurse practitioners. Half of agencies specializing in substance use say they have difficulty filling open positions, primarily because of a lack of qualified applicants. Turnover is high (19 percent nationally, but 40 percent in some reports)[7] because “addiction counselors move among vacant positions in the field or leave the field altogether because of its low wages and benefits and heavy caseloads, as well as the stigma associated with both having addictions and working with people who do.”[8] Unable to offer a competitive salary, Sullivan County had difficulty filling five vacancies, including four social work positions and a CASAC. “Our pay-scale here in Sullivan County is not very good,” one government official observed. And you “can’t get something out of a dry well.”

From providers, we have also heard about the impossible bind they are in: reimbursement rates are too low — often they don’t cover the costs of what they’re required to provide, let alone structural improvements they want to make to their facilities. “I’m expected to provide a specific amount of units of service,” one provider explained (a unit of service in this case is sixty minutes of therapy). But units of service do not take into account the work that social workers and others must do in coordinating a patient’s care and social service needs (e.g., with parole, foster care, etc.).

 

Missed Opportunities

We may not appreciate how hard it is for a person with a substance use disorder to say “I’m ready.” Withdrawal is physically painful, and recovery is a lifelong task. But, people who are addicted to opioids can be more afraid of withdrawal than death, and the root causes of their addiction still persist even when they achieve sobriety. According to one person in recovery, “I didn’t care if I woke up. I would have welcomed it at one point. Death is not a motivating factor to stop using because how much worse could your life get.… Withdrawal is frightening. The physical symptoms, they’re bad.… Once you get past that, it won’t go away. You think that it just goes away once you stop taking the drug but there’s always some underlying issue that’s going to come up. There’s always going to be something else to address.”

 

People in rural communities like Sullivan have a difficult time accessing services, but it is not just because there are so few treatment options. In fact, New York actually does pretty well in providing treatment when compared to other states.

 

Turning away people who want help is a missed opportunity to save a life. Opiate withdrawal may lead to morbidity or even death, and there’s a high probability taking another dose of illicit opioids will be lethal. When someone asks for help, as the head of a nonprofit explained, “we need a way to respond to that, quickly.” Yet, people on the frontlines feel caught between a rock and a hard place. They cannot provide the help they may want to. They cannot force insurance companies to pay for treatments they think will be best. They cannot make people with substance use disorders get treatment. One psychiatrist explained the difficult part is getting the person to say “I’m ready.”

What happens if we make it easier to seek treatment? If we are going to strengthen our response to the opioid crisis, then solutions should be based on the assumption that people addicted to opioids are doing everything to avoid that incredibly painful experience of withdrawal and the understanding that recovery is a lifelong process.

 

Policy Solutions

Opioid overdoses kill more than 40,000 Americans a year, more than 3,000 of which are New Yorkers. In previous blogs, we showed the collateral damage addiction causes families and communities. We’ve asked how to stem the tide. One crucial step is ending the illusion of services and making sure that services offered on paper are accessible in person. Here are some places to start:

1. Make access easy and open. Every community needs a place where people with substance-use disorders can get help, whether that point of entry is a hospital emergency department or a stand-alone clinic, where they won’t be turned away.

2. Achieve parity in protocols for treating people with substance-use disorders and other life-threatening conditions. Opioid withdrawal can be dangerous because its symptoms cause dehydration and desperation. Even more problematic, the next dose of a controlled substance, especially illicit opioids, could be a person’s last dose. If there’s one factor that distinguishes opioids from other drugs, it’s their lethality. Getting people to treatment and making sure they have what they need to get better is imperative if we’re to make progress on this problem.

3. Help treatment providers meet their staffing needs. If treatment beds are available, but nobody is there to answer the phone or do intake, it’s as if the bed didn’t exist at all. Treatment providers have trouble hiring qualified doctors, nurses, CASACs, and social workers. It’s hard work. The pay is terrible. Positions stay empty for a long time and, even when they are filled, turnover is high. Finding a way to incentivize people to get the required education, take a job, and stay in it is essential for providing necessary services.

4. Pay providers reasonable reimbursement rates to cover the costs of services. When reimbursement rates for some conditions and services are generous and others are not, hospitals, doctors, and medical professionals gravitate to more lucrative fields in the most desirable locations. If we want to make sure people get the treatment they need, it cannot be a money-losing endeavor.

5. Incentivize medication-assisted treatment. If it’s easier and more lucrative to prescribe opioids than the medication to treat substance-use disorder, should we be surprised that people become addicted and cannot find help? Even though medication-assisted treatment is the standard of care for the treatment of opioid addictions, there is still pushback from physicians, patients, and their families who think that it is substituting one drug for another. There aren’t enough doctors who can prescribe medication-assisted treatment. Those doctors who do cannot accept enough patients. And these doctors aren’t located in the communities (often rural) that need them most.

The illusion of services can be more frustrating than having no services at all. In the case of the latter, it’s clear what is not available and what people do not have access to. But it is exasperating to people on the frontlines of the opioid epidemic to see services that are supposedly available be just out of reach.

 

People are knocking on doors only to be turned away. If we are serious in our fight against opioids, then our approach must be altered.

 

 

Conclusion

People in rural communities like Sullivan have a difficult time accessing services, but it is not just because there are so few treatment options. In fact, New York actually does pretty well in providing treatment when compared to other states. Roughly 10 percent of the nation’s opioid treatment programs are located in New York (of 130 total facilities). Still, certain practices and procedures make it difficult for people to receive treatment, even when they are ready to ask for help. The perception that there are no services in places like Sullivan may not be wholly accurate.

However, people are knocking on doors only to be turned away. If we are serious in our fight against opioids, then our approach must be altered. The solution is not necessarily to continue adding more treatment beds, but rather to make sure people have immediate access to the ones already there. In short, the first step should be to make sure what we promise on paper, we deliver in person.
 

 

NOTES

 

[1] These criteria are based on guidelines issued by the Substance Abuse and Mental Health Services Administration (SAMHSA). Cited in Evidence-based Practices in Drug and Alcohol Treatment and Recovery (Scottsdale: Magellan Health, June 2016), https://www.magellanprovider.com/media/32436/su-monograph.pdf.

[2] Roger A. Rosenblatt et al., “Geographic and Specialty Distribution of US Physicians Trained to Treat Opioid Use Disorder,” Annals of Family Medicine 13, 1 (2015): 23–6.

[3] Sarah E. Wakeman and Josiah D. Rich, “Barriers to Medications for Addiction Treatment: How Stigma Kills,” Substance Use & Misuse 53, 2 (2018): 330–3.

[4] Christopher M. Jones et al., “National and State Treatment Need and Capacity for Opioid Agonist Medication-Assisted Treatment,” American Journal of Public Health 105, 8 (2015): e55–63.

[5] Rosenblatt et al., “Geographic and Specialty Distribution of US Physicians.”

[6] Michael A. Hoge et al., “Mental Health And Addiction Workforce Development: Federal Leadership Is Needed To Address The Growing Crisis,” Health Affairs 32, 11 (2013): 2005–12.

[7] Hoge et al., “Mental Health And Addiction Workforce Development,” citing Ryan et al., 2012; Evidence-based Practices in Drug and Alcohol Treatment and Recovery.

[8] Hoge et al., “Mental Health And Addiction Workforce Development.”

 


 

Patricia Strach is the deputy director for research at the Rockefeller Institute of Government
Katie Zuber 
is the assistant director for policy and research at the Rockefeller Institute of Government
Elizabeth Pérez-Chiqués is a research assistant at the Rockefeller Institute of Government

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