Programs

I have spent nearly 1,000 hours in therapy since I first received a borderline personality disorder (BPD) diagnosis nearly five years ago. Although it has by no means been a walk in the park every single week, I have reached a point in my life where I no longer meet the criteria for BPD and feel (mostly) satisfied with my day-to-day routines. Like many people who receive a borderline personality disorder diagnosis after a hospitalization, I was given the contact information for local dialectical behavior therapy (DBT) treatment facilities and therapists trained in this modality who may be able to help. What I didn’t realize at the time was that DBT isn’t the only option out there for people like me. In fact, there are a total of five different types of therapy that all have a proven success record with borderline patients. 1. Dialectical Behavior Therapy (DBT) Dialectical behavior therapy (DBT) is an evidence-based therapeutic modality designed specifically for individuals with borderline personality disorder. Psychologist Marsha Linehan designed DBT in the 1980s. Linehan, who spent years researching clients with extreme emotion dysregulation and suicidal urges, felt like cognitive behavioral therapy (CBT) caused these clients to experience burnout, lack of motivation, and invalidation. So, she combined some of the aspects of CBT with the ideas of acceptance and mindfulness practice to create a modality that was more fitting for this clientele. Fully-adherent DBT includes weekly individual therapy sessions, weekly skills group education sessions, and phone coaching between sessions. A full course of DBT takes around six months to complete, and clients are encouraged to complete two cycles to master the skills for mindfulness, emotion regulation, distress tolerance, and interpersonal communication. 2. Mentalization-Based Therapy (MBT) Mentalization-based therapy is another evidence-based practice created specifically for people with borderline personality disorder. It’s highly beneficial for people who experienced early childhood trauma that caused abandonment issues or people with insecure attachments to one or both of their parents. The modality borrows some techniques from other common types of therapy, including cognitive-behavioral, psychodynamic, social-ecological and systemic therapies. However, the main focus of this specific modality is to enhance each person’s ability to differentiate between their own emotional state and the emotional state of those around them. This concept is called mentalization, and it is something that many people with BPD struggle with. By learning how to separate your own emotions from others, you can regulate your emotions more effectively and spend less time trapped in a dysregulated state. Like DBT, people who enroll in MBT with a therapist typically attend weekly individual sessions as well as weekly group sessions. Unlike DBT, though, members in groups often interact with each other to offer advice and learn from one another. 3. Transference-Focused Psychotherapy (TFP) Transference-focused psychotherapy (TFP) is a specific type of psychoanalytic treatment in which the focus is on the relationship between the therapist and the individual client. The idea is that by focusing on the interpersonal dynamics that occur between the therapist and the client, the therapist can gain insight that will help the client improve. According to therapists who use TFP, most people develop BPD because of dysfunctional relationships with parents and other caregivers during early childhood. For people who live with borderline personality disorder, TFP is used to uncover the underlying causes of a person’s borderline symptoms so they can build new, healthier thought processes and behaviors. 4. Systems Training for Emotional Predictability and Problem Solving (STEPPS) Systems Training for Emotional Predictability and Problem Solving (STEPPS) is a manual-based, 20-week group therapy program designed specifically for people with borderline personality disorder. Like dialectical behavior therapy, STEPPS combines cognitive behavioral elements and skills training in a group setting. The skills group programs meet once per week for two hours each session. The groups are typically led by a pair of therapists, and the groups are kept fairly small, with around six to 10 participants at a time. Within STEPPS, individuals learn how to identify automatic thoughts through schema work, monitor their symptoms, and how to problem solve situations in healthy manners. STEPPS also teaches the importance of self-care, and how to better manage overwhelming emotions. Although it has not gained as much recognition as other therapeutic modalities for people with BPD, it is still an evidence-based approach with studies that show its success. 5. Trauma Treatment Studies show that people with borderline personality disorder are 13 times more likely to have experienced early childhood trauma. Because of the strong links to trauma, many clinicians have started using trauma treatment with BPD clients to see if processing the trauma helps lower emotional intensity and other symptoms. In fact, some preliminary studies show trauma work as a viable option for people who have BPD and a trauma history. There are several notable types of trauma treatment that work well for people with borderline personality disorder who also have a history of trauma. Some trauma treatment methods that may work include eye movement desensitization and reprocessing therapy (EMDR), skills training in affective and interpersonal regulation (STAIR), and cognitive processing therapy (CPT). While each approach is a little different, they are all methods of processing trauma, which can help decrease symptoms over time. Like most other mental health conditions, treatment options for people with borderline personality disorder shouldn’t be a “one size fits all” approach. However, many people with BPD don’t realize just how many viable treatment options exist for them, and instead they give up when one recommended method doesn’t work. If you are looking for a path to recovery from borderline personality disorder, I hope this list gives you some options to pursue. Recovery from BPD is possible —  it’s just a matter of finding the treatment method and lifestyle that works for you.

Electronic Visit Verification (EVV) is a system of tracking personal care services such as in-home care that are funded by Medicaid. EVV smartphone apps are designed to verify a care worker’s identity and the date, time, and location where personal care services were provided. EVV apps utilize GPS, biometrics, and/or other invasive technologies, and have been widely criticized by the disability community for their violations of privacy and how they impede the independence and freedom of movement of people who receive personal care supports. One of the primary motivations behind including Electronic Visit Verification in the 21st-Century Cures Act was based on the myth that there’s rampant fraud in the personal care services program nationally. The Congressional Budget Office (CBO) in 2016 projected that $290 million would be saved over 10 years if EVV was included in the bill and this projected savings was a “pay for.” It has been widely reported that the EVV industry was lobbying for its inclusion with the position that EVV was the best way to stop fraud, waste, and abuse in personal care services (PCS). It’s more than a coincidence that it would also launch a requirement to purchase and maintain their software in practically every state. Despite national disability and privacy organizations vigorously protesting EVV, the bill passed and included it. However, the law simply requires that location is one of the data elements that need to be gathered and reported by states. It doesn’t specify or mention the use of Global Positioning Systems (GPS) or biometrics like facial or voice recognition. It was CMS that required GPS through guidance. The EVV industry was already selling their monitoring systems of personal care services workers to state Medicaid agencies with the promise that they would meet CMS guidance and, if used, would be complying and not trigger Federal Medicaid Assistance Percentage (FMAP) penalties imposed by the legislation for non-compliant states. Disability rights advocates, unions, state Medicaid agencies, disability trade organizations, personal care services workers, and many more affected people were stunned. In the case of California’s IHSS program, the largest self-directed (the disabled person is the employer, not an agency) program in the country with 400,000 disabled personal care services consumer employers who were successfully using a web-based portal reporting system prior to Cures, it meant that the state had to discontinue this very effective tool to comply and to not be penalized with cuts in FMAP. Once issued, this CMS guidance forced people with disabilities and their personal care services workers to give up their right to privacy. The EVV industry sells states canned programs that use GPS and biometrics that track the physical location of the workers and by default the people with disabilities who employ them. EVV is one of only two federal programs that track recipients of service; the other is the Bureau of Prisons home confinement program. An unintended consequence has been a severe exacerbation of the personal care services workforce shortage. EVV systems are subject to state modifications and developed to easily incorporate them which has resulted in onerous and unnecessary practices in several states that make it extremely difficult to navigate and use location requirements daily. Some states use “geofencing” that sets boundaries that disabled consumer employers are restricted to outside of the home. If their personal care services worker’s GPS marker is detected beyond the preset boundaries, it triggers an “exception” that then leads to a review process by the state/vendor that often holds up payment to the worker. It’s easy to understand why workers are reluctant to join this workforce, be subject to surveillance, and generally be paid less than fast food chains with no benefits. As EVV continues to go live in the states, an alarming number of problems reported by self-directed PCS consumer employers are arising that undermine their control of their employees and make it practically impossible to recruit qualified workers to meet their needs. Thousands of people with disabilities across the country are being forced to manage their personal care with significantly less assistance than they actually need due to the imposed restrictions and worker shortages caused by EVV. Many are being forced back into nursing homes, which is a civil rights violation under the ADA Olmstead decision. This poor public policy is because of the alleged fraud, waste, and abuse projected in the original EVV section of the 21st-Century Cures Act. In 2022, Applied Self Direction, a non-partisan technical assistance organization, analyzed General Accounting Office (GAO) data reported by the National Medicaid Fraud Control Units (MFCU) and found that the actual numbers in the self-directed PCS programs are at an annual rate of .0002% of fraud convictions that totals $6,065,610.The federal annual Medicaid expenditures for self-directed programs are approximately $100 billion. The incidence of fraud, waste, and abuse in self-directed PCS is negligible and is far exceeded by the amount of Medicaid HCBS money spent on EVV systems purchases and maintenance. For example, in Texas, from FY 2017 to FY 2021, the state spent just over $1.3 billion to implement EVV. This information was obtained through a FOIA request, and the shocking amount of money spent to date is a bellwether of what has been spent in the 35 other states that have implemented EVV. Suffice it to say, the EVV industry that provides the software, training, and maintenance paid for by Medicaid is thriving and policymakers must address the very clear data that shows the expense of EVV far outweighs any benefits derived. PCS employers and workers and their allies realized that the only way they could beat back the dangerous effects of the 21st Century Cures Act was to push for legislative change in Cures 2.0, filed by Representatives DeGette and Upton in 2021. As a result, section 409 prohibits the use of GPS and biometrics in personal care services. It’s important to understand that PCS includes home care agencies as well as self-directed programs. Home care agencies have been using GPS and biometrics as part of their business model for many years prior to the original 2016 legislation. Agencies that employ PCS workers want to continue monitoring their employees, but the vast majority of self-directed PCS consumer employers do not. The power and influence of the home care industry could kill the EVV protections that self-directed consumer employers have fought hard for over the past five years. Anticipating this, four national organizations led by the National EVV Consumer Employer Coalition and ADvancing States met several times to reach a consensus on compromise legislative language in Cures 2.0 that separated self-directed PCS from home care agencies. The language gives states the flexibility they need to properly implement EVV but prohibits the use of GPS and biometrics in self-directed PCS programs. Thus, agency-based home care would not be subject to this provision and can continue using employee surveillance. The hope is that both groups can work together to forge a good faith relationship that will embrace the compromise legislation and encourage the congressional Energy & Commerce Committee to adopt it. It’s a sensible solution that allows for the protection of privacy and consumer employer choice and hopefully blunts the effects of worker shortages for self-directed programs. The most important outcome that outweighs any differences is that both groups can continue to work together to keep people with disabilities and elders out of nursing homes and living with dignity in the community. The success of not only this bill but future legislation and policies and programs hinges on how well the disability and elder communities and the programs that serve them can find common ground to keep and maintain independent living and aging in place values at the forefront.

At the beginning of 2021, the state retirement and disability program from which I receive benefits notified all of its members that effective January 1, 2022, they would no longer be able to provide members under a certain age with group health insurance. This applied to “regular” retirees and disabled retirees alike. Even though we paid a premium that was deducted from our monthly benefits, the cost to provide health coverage to all of us had become too prohibitive. Instead, we all would have to buy health care plans through the Affordable Care Act (ACA). The program also said that in fall 2021, we would be contacted by a benefit counselor who would help us through the transition and assist us with choosing health care plans that could best meet our individual needs. I was terrified. I have Crohn’s disease and specifically applied for these disability benefits because I desperately needed good health insurance. Twenty years ago, I was working for a regional government planning agency. My office manager, who had done some research on my behalf, discovered that after 10 years of service as a public employee of the state, I was eligible to apply for the disability benefits provided by our retirement plan. This was my first job out of college, and unfortunately, during many of those 10 years, my Crohn’s disease was at its most severe. I spent as much time in the hospital as I did at work. My supervisors and coworkers did everything they could to keep me employed, allowing me to work from home for extended periods of time so that I could continue to retain my health insurance coverage. They even made an attempt — albeit unsuccessfully — to donate some of their sick days and vacation time to me. My work situation was becoming untenable. I was only in my early 30s, and I had determined that my actual monthly monetary benefit would be small. Still, I jumped at the chance to have good health insurance without the intense pressure of trying to maintain my employment status. Therefore, when I was approved for health care benefits shortly after I applied, to say I was relieved would have been the understatement of the century. I’ve had Crohn’s disease most of my life. I was finally diagnosed at age 10 after my mom decided to bring me to one of the nation’s top medical facilities — which just so happened to be located about 90 miles away from where I lived in Northeast Ohio. The health insurance provided by my disability plan was a good PPO plan that allowed me to continue to receive my care from all of the specialists who had always been part of my medical team. Although my disease had become quite severe, I had the utmost faith in my doctors. They were not only some of the best in the world, but they also had known me for most of my life. This gave me a strong sense of security and peace of mind because I knew that no matter what might happen, I would have great care. My peace of mind would eventually erode, however, as I discovered that the health care plans offered to me through the Affordable Care Act are not PPOs but are HMOs instead and that there is a big difference between the two types of plans. Neither my specialists nor the hospital where they worked accepted any of the HMOs that were available for me to choose from. I found the same to be true of another well-known hospital that is also located in Northeast Ohio — in close proximity to the one I had been going to. Furthermore, I found that all of the HMOs I could choose from were extremely limited in their coverage geographically. When I searched for any kind of in-network provider, be it a gastroenterologist (GI) or a primary care physician outside (PCP) of a 40-mile radius, I was out of luck. It became disheartening quickly. But outside of finding a full-time job, this health care plan was my only option. After doing some extensive research on gastroenterologists in my area and talking with my doctors, I finally found someone who I felt fairly confident seeing. This particular GI doctor had actually been on staff for a few years at the hospital where I had been receiving my care. Fortunately for me, when he left there, he started a practice close to where I live, and he’s proficient at advanced endoscopic procedures — which is an extremely important need of mine. More importantly, though, he was covered by the majority of the HMOs that were available for me to choose from. In early November 2021, I had a session with a benefits counselor who thought there was a mix-up after talking to me. They called a supervisor and was shocked to learn that the program was indeed cutting off health insurance to its disability retirees because the program could no longer afford it. After about three hours on the phone together, the benefits counselor and I found a health insurance plan that met all of my basic needs for in-network providers — including the new GI doctor, my primary care physician, and my gynecologist. All of my necessities were also covered under the plan. However they were covered at different tiers than before — which meant a co-pay increase — and many of them now required a pre-authorization every eight weeks to every six months. I have come to learn that the pre-authorization process can be time consuming and frustrating. But so far, I have not gone without anything I need. Ultimately, I’m grateful that the ACA exists and that my disability program provided me with the tools to help me choose the best health insurance plan available to me. However, I specifically applied for these benefits because my retirement plan offered them, agreed that I am disabled, and thus agreed that I qualified for the benefits. I’m not a “regular” retiree — I am a disabled retiree. Therefore, I need the kind of health insurance provided by a group plan — a PPO. I need the kind of health insurance that doesn’t limit people from seeing specialists or going to hospitals outside of some arbitrary geographical boundary. I would have hoped by now, 20 years on, that health care in America would have gotten far better for disabled people, not worse. We have come so far over the years and are far more inclusive of disabled people than in the past in so many ways. Health care is so important to us, yet we are so far behind in this regard. Personally, having my options limited to such a degree was an extremely daunting prospect for me. The change in coverage was significant and, although my coverage is sufficient for now, in the future, it may impact the level of care I receive, the medications I am able to afford, and my quality of life. I don’t claim to have the solution to this problem, but it seems to me that something is really wrong when disability programs can no longer afford to provide the level of quality health insurance plans that its recipients truly require.