Over the last several decades, more people with disabilities are living in the community rather than in institutions. This has led to an expansion of states’ Home and Community Based Services (HCBS) programs. A new rule was issued by the federal government in 2014 called the HCBS Settings Rule. It, for the first time, defines "community" for all Medicaid-funded HCBS programs. The Rule ensures that people receive services in HCBS settings that help them be integrated in the community. It promotes best practices developed by states, providers, and Direct Support Professionals (DSPs) over years of working with and learning from people receiving services. The Rule will enhance the quality and availability of HCBS. It also will ensure that all people receiving HCBS have full access to the benefits of community living. This includes opportunities to live, work, and receive services in integrated, community settings.

The HCBS Settings Rule ensures that HCBS settings provide people with disabilities supports that promote:

• Access to the broader community,
• Meaningful control over daily life decisions, such as deciding what to eat and setting their own schedule,
• Personal relationships, including relationships with people without disabilities who are not paid to be in their lives and the ability to have visitors at any time,
• Choices about what services they receive and who provides them,
• Opportunities for competitive integrated employment, and
• Individualized supports.

The HCBS Settings Rule will help states meet their requirements under the Americans with Disabilities Act (ADA) and the Supreme Court’s decision in Olmstead v. L.C. These laws require that services are provided in the most integrated setting appropriate to the person’s needs. This means settings where people with disabilities have opportunities to interact with people without disabilities to the fullest extent possible.

It will take states and providers of disability services time to adjust their programs to come into compliance with these new standards. The Rule gives states until March 2022 to develop and fully implement a "State Transition Plan" (STP). It requires that the public has an opportunity to give input into these STPs. Public input is a critical opportunity for DSPs, people with disabilities and their families, providers, and advocates. Through comments, people can impact how their state will implement this new Rule in their service system. States are beginning to submit their STPs for review. A number of states have received approval for their plans.

According to the HCBS Rule, the public must have an opportunity to give input in these State Transition Plans. Public input is a critical opportunity for stakeholders – including DSPs, people with disabilities and their families, providers, and advocates.

The Role of DSPs

The HCBS Settings Rule is an important step towards ensuring that people with disabilities can participate fully in their communities, achieve greater independence, and engage in social, recreational and employment opportunities that are meaningful to them. However, the integration and inclusion envisioned by the Rule cannot be fully realized without the hard work, dedication, and leadership of DSPs.

As a DSP, you have an important role to play in your states’ implementation of the Rule.

• You have direct experience with the successes and challenges of supporting people in individualized, integrated community services. You can evaluate existing practices and service settings. You can recommend needed program changes. You can guide states’ systemic efforts to improve HCBS service models. You should share stories about ways you have found that help people experience community. When you see something that doesn’t work, share your insight into how it might be improved. Don’t underestimate the knowledge that you bring to the table.
• You can help the people you support to put individual support plans in place. You can lead efforts to implement more individualized, person-centered services. You can help people receiving supports to direct their own plans. You can do this by helping the people you support share what is important to them. Then you can support the person to achieve their desired goals. Without DSPs, many dreams won’t be realized.
• Your familiarity with the local community enables you to connect people to both formal and natural supports. You help increase people’s access to community programs and activities. You can also create opportunities for more individualized community involvement. You can serve as a bridge to meaningful community engagement.
• You have personal knowledge of the people you support. You have day-to-day involvement in their lives. This provides opportunity for promoting greater autonomy, choice, and control over everything from activities of daily living, to choosing services or providers, to the development of independent living skills. You can make sure that people receiving services know that the HCBS Settings Rule gives them rights to further these goals. This includes their right to choose their own schedule, have visitors when they want, and choose with whom (if anyone) they want to live.

Resources exist to help support people to develop skills in speaking up.

The Settings Rule provides a unique opportunity for DSPs who care about, and are invested, in the delivery of truly integrated and individualized services. The ongoing development and implementation of STPs provides a clear way to influence the direction of states’ disability service systems. For DSPs, it is a chance to use your knowledge and expertise to advance best practices. You can help identify and overcome systemic barriers. You can impact statewide system reforms. You can bring about the next generation of more integrated, inclusive community services.

The HCBS Settings Rule’s goals of choice, independence, and inclusion fit with the mission of many home and community-based provider agencies. Along with DSPs’ role in reaching these goals, it is critical that agencies’ leadership support these goals. They can do this through trainings, supervision, and the professional culture they create. Meaningful integration is made possible through the day-to-day work of DSPs. DSPs make a huge difference when they empower individuals with disabilities to be part of their communities, make their own choices, and lead more independent lives.

In conclusion, the HCBS Settings Rule is an unprecedented opportunity. It gives us the chance to move disability service systems towards best practices of providing more integrated and individualized supports. These help people with disabilities live meaningful lives included in their communities. The role of DSPs in implementing this Rule, both at an individual and systems level, is critical.

Maybe two or three times in a career something "really big" happens. A change occurs that alters, in seismic proportion, the landscape of work. The rest of the time, changes largely go unnoticed. New practices and policies bubble up and push their way to the forefront. Sometimes, they co-exist with older ways of doing business. The process is slow. Occasionally, though, just as in nature, you witness radical change. The shifts in thinking are groundbreaking. You feel an earthquake-like shaking of the assumptions we have held for years. In the wake of these "big ideas" in human services, the path is cleared for new possibilities in the way Direct Support Professionals (DSPs) work with people.

The "goodness" of some shifts in human services is clear. The best of the "big ideas" fall into this category, motivated by deep forces at the core of our humanity. These forces include self-determination, independence, productivity, contribution and inclusion. Released, such forces uplift community and make it a better place for all. We all know examples of good and powerful paradigm shifts. There were the gentle winds of person-centeredness, a return, some said, to the soul of our work. There was the thunder storm of the Supreme Court’s ruling in Olmstead v. L. C.¹, a case that washed away the old belief that the best we had to offer were congregate services. Most recently, a benign wave—the Home and Community Based Services Settings Rule²—is moving us ever closer, in Medicaid waiver programs, to welcoming and ethical communities. These system-wide changes are unquestionably positive and dynamic. They deepen the dignity and respect that we give to one another and, in doing so, transform lives. But what about another change: one that is equally powerful and pervasive, yet more controversial? What about the incredible heat created as managed care³ has pushed the tectonic plates at the foundation of Medicaid long-term services and supports? Is this shift subtle and unnoticeable or is it seismic? Either way, does it matter for DSPs?

Some argue that managed care is just a distant thunder for the frontline workforce. DSPs, they say, can shrug it off and go about their business. But, to the contrary, this is a hard rain with rolling thunder and a real impact on you and those you support. When skilled DSPs understand why managed care matters and learn to work with its force, there is potential for a common good.

Managed care

Not all managed care is the same. It is a potential force for good, when used the right way. The various features of managed care are often called a "toolkit" and for good reason. Tools are neither good nor bad. It’s how we use them—at all levels of a system—that matters.

Perhaps the most powerful managed care tool is capitation. Capitation is the set amount of money that a Managed Care Organization (MCO) gets. It is based on the numbers and characteristics of the people to be served by providers in the MCO’s provider network. In managed care, an MCO gets a set, or capitated, amount of money up front. This is different from the traditional, fee-for-service system, where the organization gets reimbursed after a service is delivered and the bill is sent in. If managed care is implemented well—with a fair rate for providers; equitable access to needed services and supports; and system performance measured against outcomes that matter to each person served—capitation can be a powerful tool for DSPs.

In managed care, an MCO gets a set, or capitated, amount of money up front. This is different from the traditional, fee-for-service system, where the organization gets reimbursed after a service is delivered.

Think about a familiar service: supported employment. Look at how that service plays out in many fee-for-service systems. It is typical for job coaches to bill for time spent face-to-face with the individual. The provider gets paid for the hours spent on job development—but only when the job development is complete. This creates a financial incentive to continue to "job develop." But the presence of the job coach at a work site when it is no longer necessary may reduce the person’s chances of developing relationships with co-workers. Over time, the result may be to limit the size and quality of the individual’s personal network. In this example, the fee-for-service system also does not reward the best DSPs. In fact, the practice of billing hourly for job development may mean that the job coaches who are the most efficient at developing jobs draw down less of a reimbursement for their employer. Provider reimbursements based on the number of hours spent in job development may mean that you move on too slowly to the next person. This unintended result of the fee-for-service system pulls against the direction in which the system is trying to move: getting people jobs.

By contrast, managed care’s capitation, paired with data collection, can create a more effective approach to employment. Paying up front can facilitate positive outcomes for the person supported. It can also make a job coaches’ successes more prominent. Up-front payment to the provider for an outcome like competitive integrated employment creates a financial incentive for job coaches to be efficient and effective. In this environment, the DSPs set sight on the outcome. You seek out a job that matches the person’s skills and interests; identify natural supports in the workplace; and access needed services. You fade supports when the outcome is met. MCOs collect a lot of data. If the data shows that the job meets the mark for the desired outcome, the MCO will be more likely to continue to contract with your employer. In the best of managed care systems, DSPs who deliver on individual outcomes will change lives and be valued for doing so. Moreover, MCO data about providers’ outcomes, when shared with the public, can assist people and families in choosing an organization, or even a DSP, with whom they want to work.

Managed care can promote innovation

Take the job coach example again. A tech-savvy provider may encourage DSPs to use technology—such as smart phones, tablets, and apps—to support employment outcomes. Using technology may help you become more efficient. Or it may assist a person with a disability to become more independent at work. Efficiency is a key goal of managed care. Better use of a job coach’s time means more people get jobs. Sufficiently funded and with a clear eye to outcomes, managed care has potential to hone best practice. It can empower DSPs to excel; help people achieve their life goals; and promote innovation in the delivery of services and supports⁴.

Managed care can advance DSPs’ mastery of competencies and raise their stature as professionals

The Americans with Disabilities Act (ADA), the Olmstead decision, and Medicaid’s HCBS Settings Rule are integrating services more seamlessly into daily life. Services and supports are increasingly tailored to a person’s unique needs. They take place in an individual’s home, school, worksite and community. In traditional, large group settings, supervisors and managers are on the premises. They provide DSPs with hands-on supervision. However, in inclusive, community settings, you often work solo. Out in the community, there are more opportunities where the DSP’s independent judgment and training are put to the test.

Your performance matters more than ever in a managed care environment. The MCO has its sights set on getting what it has paid for in advance. With data-driven accountability front and center, MCOs need providers that can deliver. For providers to thrive, the DSPs they hire must have the knowledge and skills to work independently, efficiently, and successfully. Never has a DSP’s demonstrated competency on the job mattered so much. It’s no accident that, in 2014, CMS published a set of core competencies for the frontline workforce in human services⁵. This development is accelerating the adoption of competency-based training for DSPs⁶. The need to hire highly competent DSPs who can work independently will likely strengthen the push, already underway, towards credentialing DSPs⁷. Managed care’s emphasis on outcomes and accountability is creating a gravitational pull. This pull is moving DSPs from paraprofessional to professional status. With that comes a new aim for MCOs and providers: to develop and adopt policies to recruit, retain, and reward this important workforce.

With data-driven accountability front and center, MCOs need providers that can deliver. For providers to thrive, the DSPs they hire must have the knowledge and skills to work independently, efficiently, and successfully. Never has a DSP’s demonstrated competency on the job mattered so much.

Managed care can improve retention of DSPs and promote valued outcomes

Competency-based training for DSPs is a sign of the times. It is used in both Medicaid fee-for-service and managed care systems. It is a particularly important addition, however, to the managed care toolkit. Research on the use of a competency-based curriculum for DSPs shows that such training reduces turnover⁸. Reduced turnover means longer retention of staff. When DSPs stay longer in a job, provider costs are dramatically lowered. Managed care strives for cost efficiencies.

Managed care systems that value those DSPs who can demonstrate core competencies are an even bigger win for people with disabilities. Studies show that competency-based training for DSPs results in improved outcomes for the people they serve⁹. The implications of this finding are earth shaking. MCOs that embrace competency-based training for DSPs can build a more qualified workforce. MCOs can also lower turnover and achieve savings. Finally, MCOs can use those savings to serve more people. This not-so-distant rumbling of change promises new career paths for the professionals who are indispensable to successful managed care systems: DSPs.

Managed Care will increasingly rely on DSPs to improve the quality of services

As managed care adjusts itself to the values of person- and family-centered thinking, Olmstead’s mandate, and the requirements of the Medicaid Settings Rule, the meaning of "quality" will be transformed. Your skill as a DSP will ultimately "make or break" an organizations and a systems quality improvement efforts. The strength of the system, at its foundation, will be determined by DSPs. It is your abilities to respond to the "unique culture, social network, circumstances, personality, preferences, needs and gifts of each person"¹⁰ that are the touchstone of exceptional service delivery.

Managed Care systems

Not all DSPs move mountains. Neither is all managed care good. Sometimes managed care merely pays providers to do the same thing faster, at less cost, cutting corners and underserving people along the way. Other managed care systems are skillfully set on a course to achieve quality. The best managed care systems invest in DSPs and that investment acts as a renewable energy that fuels quality. At the core of these systems, there is a "big idea" about quality. This elemental principle is simple, but of seismic magnitude in its capacity to bring about positive and pervasive change in any managed care environment. That principle is this: quality is "defined at the point of interaction between the staff member and the individual with a disability."¹¹ It is from this point that the profoundly good energies of ethical community spring into being. It is from this place that DSPs can and do move mountains, changing lives for the better.

The foundation of employment and day services was built more than 125 years ago. Sheltered workshops were created for people with visual impairments¹. The first sheltered workshops were meant to provide people more opportunities for community engagement through work. But these institutions always fell short of integration and inclusion². People were always separated from others without disabilities. However, this failure did not stop service providers from creating many similar programs. Many began in the latter half of the twentieth century. For example, in 1979, the Department of Labor reported that the number of sheltered workshops had increased from 85 in 1948 to 3,000 by 1976³. This is a 30-fold increase!

At the same time, disability advocate and founder of the Independent Living Movement, Ed Roberts, called for a shift in the way disability was viewed. He wanted everyone to "develop high expectations for people with disabilities, allowing them to have control over their lives and to engage in meaningful aspects of life and participating in their communities by working."⁴ Working can be an important way that all of us earn a living and develop relationships with others. Opposite of Roberts’ vision, people who participate in facility-based settings and sheltered workshops may have limited opportunities to connect with their communities through work. In 2015, over 134,000 people served by IDD agencies in the US participated in sheltered workshops during the day⁵. A large number of people have no work at all.

Recently, there has been a shift in expectations around employment. This is shown by the "Employment First" philosophy: "Expecting, encouraging, providing, creating, and rewarding integrated employment in the workforce as the first and preferred option of youth and adults with disabilities."⁶ The Centers for Medicare and Medicaid Services have put this shift in expectations into policy. The policy states that home and community-based providers require that all licensed settings support greater access to the community. This includes supporting opportunities for employment in competitive and integrated businesses⁷. In addition, the federal Workforce Innovation and Opportunity Act (WIOA) was signed into law in 2014. WIOA was designed to increase successful employment opportunities through more access to education, training, and support services.

The U.S. Department of Labor’s Office of Disability Employment Policy defines customized employment as a flexible process designed to personalize the employment relationship between a job candidate and an employer in a way that meets the needs of both. It is based on an individualized match between the strengths, conditions, and interests of a job candidate and the identified business needs of an employer. Customized employment utilizes an individualized approach to employment planning and job development — one person at a time . . . one employer at a time.⁸

Customized employment aligns well with the federal policies mentioned above. It gives people the chance to find jobs that fit their skills and interests. People are more likely to do well at their jobs, work at regular businesses, and earn competitive wages. By using customized employment, individuals are able to connect with others through the typical flow of daily working life.

Research helps show how much we need these policies and changes in our practices in supporting people with disabilities to find and keep community-based jobs. In a survey of over 16,000 people with intellectual and developmental disabilities, only 19% of people had paid work in the community⁹. Of the people who did not have a community job, nearly half of people said that they would like to have one. But only 30% of people had community employment as a goal in their service plan.

These numbers show there are lots of opportunities for DSPs to support people to find and keep a job that matches their skill set. This may require changes in day-to-day practices. What follows are a few suggestions that DSPs can use and suggest to their organization.

• Embrace change. Although it is important to be thoughtful and take time to clear a path toward customized employment, don’t get stuck in planning. The time may never be "just right" for making change.
• Start small. Customized employment is a person-by-person approach. Resist the urge to try new processes on a large scale. There will be new skills and processes to learn. Work on concrete steps and actions. This will keep you moving forward.
• Start with someone who really wants a job. Rather than identifying someone who has little interest in employment or little team support, learn along with someone who is very motivated to find a job. Their enthusiasm and your commitment will be a great combination for going on the journey together. Then repeat the process as many times as needed.
• Dig deeper with person-centered planning. Ask questions while developing person-centered descriptions that delve deeper into what is important to a person. Move past basic, formulaic questions. One helpful tool is the Personal Outcome Measures®¹⁰. This tool explores how people use their environments. It asks whether or not people are currently included in their work settings. It helps identify how people are or are not included in their community, and how they would like to participate. It moves beyond identifying a person’s interests and skills. These questions are so helpful for finding an appropriate job.
• Use tools with a proven track record. In addition to the Personal Outcome Measures, Discovering Personal GeniusTM is another successful approach¹¹. It uses processes for developing vocational profiles. For example, discovering a person’s ideal employment conditions. It also addresses doing informational interviews with small businesses. An informational interview is less formal than a job interview and allows the individual or employment consultant to ask questions about the business, products and services, and how the business needs are changing. A tour of the business is often part of an informational interview, and additional questions can be asked in a more conversational setting. Direct questions about available jobs are typically avoided during this process and there is no expectation of a job offer.
• Measure progress. Once a person you support sets a goal, create a tracking tool to measure progress. This should be visual, so you can see the progress! For example, make an outline of a large thermometer on paper on the wall. Fill it in as you work toward the goal. The goal may be completing 20 informational interviews in a month. Or you can make it 100 informational interviews if you create a team. Or, make it a competition with others. For each person supported, track the amount of time it takes from beginning the process to the start of a new job. Track average wage per hour and average hours worked per week. Share these numbers with others in your organization, or even your Board of Directors.
• Celebrate your success! Since you’re measuring your progress, it will be easy to see your successes. Make sure you take time to celebrate milestones along the way.
• Recognize that you can’t be successful without others. Meet with other DSPs to compare notes. Talk through challenges you’ve faced. Ask support team members to brainstorm vocational themes. Share networks. Reach out to DSPs in other organizations who use similar practices.
• Don’t give up. You might feel awkward on your first informational interviews. You will get better with practice. Use the tips and resources from Thought Sauce and keep trying.¹²

Many frameworks for developing high-quality organizations and teams can be applied to employment service organizations. Some of these are the Baldridge Foundation, The Council on Quality and Leadership, Entrepreneurial Operating System®, and Jim Collins: Good to Great. However, the framework chosen is less important than the commitment to focusing beyond the minimum standard. Reaching for high quality will have a significant impact on people’s lives.

When a person experiences a behavioral crisis, the way the Direct Support Professional (DSP) responds is very important. A behavioral crisis is when someone becomes a danger to their self or others. It can also include destruction of property. There are often warning signs that a crisis is coming, but crises can appear to happen suddenly. People who regularly experience behavioral crises around others may become unwelcome in public places. They may lose their jobs. They may be banned from public transportation. They may be at risk of institutionalization. They may also be targets of physical control by police or others in the community. DSPs should be prepared to prevent and respond to crises in homes, workplaces, community or medical settings.

How well a DSP handles behavioral crisis depends on several factors. You are more likely to accurately read the person’s signals of an approaching crisis if you are more familiar with the person you are supporting. When you have a professional relationship with the person you are supporting, you offer personalized support. Your training and perception of your role in crisis may also influence their response.

Training for DSPs

Service providers typically offer training, and even certification, in crisis prevention. However, the content is too often limited to protecting the person and DSP from an altercation. This approach is too narrow. DSPs need to learn preventative strategies. This includes reading a person’s behaviors and helping to prevent crisis. Resources to help learn these skills are provided in the Resource section below.

Too often opportunities are missed for redirecting and realigning the person’s focus, energies, and intentions before a crisis happens. New environments, interactions, and expectations can be difficult for people. The community can provide a lot of unpredictability. However, person-centered interventions — those requiring DSPs to really know a person — are widely available. These can be based in an individualized support plan. Person-centered practices can provide a framework for de-escalation. They help everyone to focus on similar goals. Supporting people in diverse, community settings can often test DSPs’ skills if they have had limited experience. It is important that you build relationships with people and support people toward their goals. You can also learn skills to identify and support the person when they have a crisis. A quick reference resource designed for DSPs and family members is provided in this issue. It is a guide for who to call if a person you support is in crisis.

Chart adapted and reprinted with permission from the course, "Introduction to Mental Health and Mental Illnesses: Lesson 5 – DSP Support Strategies," in the College of Direct Support, an online curriculum from the Research and Training Center on Community Living at the University of Minnesota, and Elsevier.

Working with and Training Law Enforcement

Law enforcement sometimes becomes involved when a person is in crisis. In everyday community life, the role of the DSP in de-escalation may sometimes be short circuited by other factors. At times, people misperceive the actions of the people you support. For example, neighbors hear a commotion down the block. Or, well-meaning citizens misinterpret an awkward scenario at a shopping mall or restaurant. They may call the police and describe what appears to them to be an altercation or threat. The next opportunity for de-escalating a crisis falls to law enforcement. Training police officers in working with people with intellectual and developmental disabilities (IDD) is important. Some police officers may have limited experience with people with disabilities, and they too may misinterpret what is happening with a person.

Great training programs for police officers exist. The Memphis Model is one program¹. This model started in 1987 as a result of the preventable death of a person with a mental illness after a misguided encounter with police. After this tragic event, the community of Memphis came together to educate law enforcement on mental health crisis. The 40-hour training covers recognizing mental health issues, crisis intervention, and de-escalation techniques. The goal is improving officer and community safety. Importantly, the model redirects people with disabilities away from the criminal justice system to the health and human service systems. Currently, there are over 2,500 communities in more than 40 states that offer a version of law enforcement training aligned with the Memphis Model.

Sadly, however, not every law enforcement training program includes training in disabilities. Typically, this only occurs when someone insists on IDD being addressed. There is also a shortage of people who are available to teach that model. In my experience as one of those professionals, providing this education to police officers leads to success in promoting and maintaining inclusion of people in their communities. Interestingly, there are also reports of police officers using the de-escalation training specific to people with IDD in other situations. Most notably, they use them in cases of domestic violence. These trainings support safe, healthy communities for everyone.

College of Direct Support on Crisis Intervention

The College of Direct Support (CDS) curriculum in the DirectCourse online training program offers courses that are specifically designed to help DSPs improve their knowledge and understanding of crisis prevention, intervention and resolution. The courses listed below are important for DSPs and other professionals who want to gain competence in preventing and responding to behavioral crises. Please explore the list below for more information on each of these courses.

CDS courses and lessons that may be helpful include the following:

• Positive Behavior Support. This course is an introduction to behavior as communication. It helps DSPs understand how to support people to communicate other ways other than challenging behavior.
• Functional Assessment. Functional assessment is a structured and comprehensive approach to understanding why a person engages in disruptive or harmful behaviors. This course teaches the value of careful and coordinated observation, asking good questions, and working with others to discover what’s behind behavior choices.
• Introduction to Mental Health and Mental Illness. This course provides the DSP specific strategies they can use in daily support such as active listening and validation. It includes information on building respectful relationships with those they support and information on how to deal with crisis situations related to mental health conditions.

DirectCourse is a trusted training program that is built on the latest research and delivered online via a powerful learning management system (LMS), and it is accredited by the NADSP. It gives you the ability to easily access, customize, track and assess training across your staff and teams. DirectCourse can help you train staff in ways that improves the lives of the people they support, while meeting compliance requirements and reducing liability. To learn more about DirectCourse visit www.directcourseonline.com